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Leif
17:11:11
Sweden
Att kunna promenera längre
Att jag ska kunna leva ett normalt liv
Det gäller att anpassa sig till sjukdomen och att leva därfter, men se positivt på minsta lilla solstråle
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Manfred
05:11:11
Germany
Bei meiner Frau wurde 2010 IPAH diagnostiziert. Neue Lebensziele, neue und bessere Medikationen sollen ihre Lebensqualität verbessern.
Der grösste Traum ist es dass eine Heilungsmöglichkeit für PH gefunden wird, damit auch familiäre Lebensträume noch wahr werden können und ein gesundes und normales Leben möglich sein wird.
Niemals die Hoffnung aufgeben, immer nach vorne schauen und weiterhin das Leben bestmöglich leben und lieben.
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Gabriele
13:10:11
Italy
I hope to obtain good news and to feel ready to take steps forward, and face PH treatments again soon. Day by day, I’m improving my knowledge of myself - my brain and my body.
To build an operative, strong net of information that keeps me updated on all main medical information (from GP’s in particular) so that I can be diagnosed early.
“Stay hungry, stay foolish” and especially ever optimistic. In my opinion this is the secret for happiness and will give us the power to win the fight against PH! The first step must always be taken by ourselves.
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cristina maria pelizari
05:02:12
Brazil
I hope the disease doesn´t advance.
That the cientists find the cure.
We should live intensely every second e run after the time to realize our dreams.
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Andrea
20:10:11
Switzerland
Tolle Lebensqualität, weniger Nebenwirkungen und viele Sonnenstunden pro Tag.
Meine Hoffnung ist, dass PH irgendwann heilbar ist.
Es lohnt sich zu kämpfen!
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Patrik
03:10:11
Sweden
In Sweden we just have started a patient association and 6 months from now I hope that most of the PH patients in Sweden are aware of our association.
My dream is that a cure will be found for my son and for everybody else who suffers from PH.
You are not alone! Even if PH is a rare disease you are not alone. Many countries have patient associations that can help you to get in contact with others who have experiences to share about PH.
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Carol
06:10:11
Norway
To support the development of the Norwegian PH association, and contribute to raising awareness for PH on rare disease day, February 29th, 2012
That a cure will be found! That my husband will live a long and fulfilling life, continuing to inspire and encourage others.
Reach out - there is hope and strength to be found in the PH community. If you are a family member to a person with PH, learn as much as you can about the disease so that you can communicate well with your loved one. Appreciate each moment of life, each moment is precious.
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Elisabeth
03:04:12
Switzerland
Dass bei mir der Zustand stabil bleibt
Heilung
Muskeltraining
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Seija
04:11:11
Finland
Pysyisin suhteellisen terveenä,ilman flunssia.
Voisin lähteä lasten ja sisarusten perheiden kanssa jouluksi Ikaalisiin lapsuudenkotiini.
Eläisin hyvää elämää , ja lottovoitostahan olen aina haaveillut ja toki unelmoin lapsenlapsesta...
Elä päivä kerrallaan ja nauti joka hetkestä, sillä ne hetket koet vain kerran elämässäsi...
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Melanie
12:10:11
France
An awareness campaign in France
I dream that PH becomes a normal illness: you are diagnosed, people know what to do, you are cured!
Know your disease, know your treatments, learn to manage them and try to be positive, you will live longer and better!
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Steffen
10:01:12
Germany
Das es meiner Freundin auch weiterhin möglich ist ihre Hobbies durchzuführen und Spaß am Leben zu haben
Das PH heilbar wird
Unterstützen Sie die erkrankten Personen so gut Sie können und glauben Sie an sie
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Elke
13:11:11
Switzerland
Mein Gesundheitszustand soll sich weiter verbessern.
PH soll in Zukunft heilbar sein.
Hoffnung nicht verlieren. Den Humor nicht vergessen. Damit geht
vieles leichter.
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Michaela
20:10:11
Germany
das es besser wird!!!
das es Medis gibt die diese Krankheit heilen...
einen PH Verein beitreten und offen mit Familie und Freunde über die Krankheit sprechen.auch die eigenen Kinder sollten miteinbezogen werden,so bald sie ein bestimmtes alter erreicht haben und die sache verstehn.
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Todor
21:11:11
Bulgaria
1. Faster diagnosis;
2. Registration of new drugs;
3. With widespread use of combination therapy to treat patients.
1. Social policy directed to patients with PH;
2. Expanding a group of patients treated with funds from the state;
3. Reduce the time to obtain the drug by the patient.
Love God and believe in the power of medicine.
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Hans
20:02:12
Switzerland
Stabilität
Heilung
Erfahrungsaustausch in Selbsthilfegruppe
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Agnieszka
24:10:11
Poland
To pass my very important exam. To vote a new board of Polish PHA. To plan my holiday.
My dream is a cure for PH... Maybe someday I will say: “I HAD PH! But now I am healthy person”. I dream also about a very strong Polish PHA and a better treatment for PH patients in Poland.
Never give up! Enjoy life! You are not alone with fight. Join the Pulmonary Association in your country. Together we can do more!
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Petra
20:10:11
Germany
Das ich noch lange so stabil bleibe, wie es zur Zeit ist.
Das man die Krankheit heilen kann.
Auch die kleinen Dinge im Leben zu sehen und schätzen zu lernen.
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Rosa
21:10:11
United States
Not to be on so many medications.
I dream of a life without this disease.
Take one day at a time. Things do get better with so many medications on the market.
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Therese
12:10:11
Switzerland
Ich wünsche mir Stabilität für meine Gesundheit
Meine Hoffnung ist, dass PH einmal heilbar ist
Es gibt auch schöne Zeiten im Leben mit PH, man muss sie nur sehen
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Martine
21:10:11
France
That research finds the drug which will cure us.
To cure, to live in a world whose engine tightened the human bus soon there will not be any more a place but for those which one it money but there will be nobody to cultivate, to prepare the meals and even to look after them! …
To remain despite everything optimist to benefit from the life even if it must be short. The disease taught us that there were important things in the life and others which are it less learn how with the others to make the sorting.
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Miriam Dominguez
19:11:11
United States
To continue improving, feeling well and gain more knowledge about the disease
To find the cure for the disease
To take their medication as directed by the doctor, always try to keep informed about the disease and never lose hope. God is always with us and will help us to find a cure.
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Vivian
30:09:11
Norway
I hope to get to the same physical condition I was in last winter when I could be quite active and gained a lot of my physical capacity and strength from careful training and exercise. I hope to be able to help my son to train our horse and to spend some quality time with my kids.
I dream of seing my son ride our horse in higher exercises of dressage:-) And I dream about seeing my girls find their paths in life and them being safe and sound. I dream of a cure for PH or for the continuing development of good medications to treat it with.
Search for the things you find valuable in life to keep your spirits high. Search the company of people you thrive with and find your nation`s PH-community. Find someone who makes you laugh:-)(even if it`s on tv). Chase the feeling of hopelessness and lonliness away by taking initiative and reach out to life in the best way you can. Make every day as good and rich as possible. And know that you are not alone!
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Eva
20:10:11
Austria
Ich würde mir wünschen, dass Lungenhochdruck sowohl bei den Ärzten als auch in der Bevökerung noch bekannter wird und jedem ein Begirff ist. So wird die Krankheit schneller erkannt und kann früher therapiert werden.
Gebt nicht auf! Wir haben in den letzten Jahren schon sehr viel erreicht und die Therapiemöglichkeien werden immer besser.Heilung für LUngenhochdruck ist nicht ausichtslos.
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Wilhelm
12:10:11
Switzerland
Das meine Partnerin eine gute Lebensqualität hat.
Das man die Krankheit heilen kann.
Sich erfreuen was man noch kann,nicht was man nicht mehr kann.
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Raymonde
22:10:11
France
Voyager et supprimer l'oxygène
Faire le tour du monde
Rencontrer d'autres malades pour partager notre experience
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Radu
12:10:11
Romania
To make a difference for the Romanian PH patients
I dream to still be around to see my 18 year old son become an architect
Keep planning, and working for your future!
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Anca CAZANEL
04:09:12
Romania
Preserve my health status to be able to work and to live a normal life, as I presently do.
A cure to be found.
You have to have patience and to be fully aware of your condition and to know what is right or wrong for you. Love yourselves, because you are as good as it gets!
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Barbara
22:11:11
Switzerland
Lebensqualität und Stabilität
Das die Krankheit heilbar ist.
Gebt nicht auf... es lohnt sich zu kämpfen!
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Juan
29:09:11
Spain
I wish for the health authorities to understand that it is imperative to protect and promote the access to proper treatment for PH patients in my country.
I dream of a world where PH Associations are strong and present in each and every country, so that we can all work for the ultimate goal of finding a cure for PH.
Find or create a PH Association to join. I recently read a sentence that I would like to share with you: "if you think that you are too small to make a difference, try to sleep with a mosquito". We might be small but we are powerful.
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Kevin
14:07:16
Australia
Recover from PEA surgery and get back to a normal life, being lucky enough to have had the operation to remove the clots.
To raise greater awareness and funds for the condition. It was surprising that even in a major Melbourne ED, the Unit Head for the shift had not heard of the condition!
Just do your best to get though it all - remember there are always others who are worse off than yourself.
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Danijela
02:08:15
Serbia
I hope that I will change experiences abouth PH with other people, to provide support to those with PH, because I live with pulmonary hypertension over 30 years...and still going.
My dream is to find a drug that will make life easier with pulmonary hypertension. I dream that I forget what it's like to live with shortness of breath and chronic fatigue. I dream that I'm traveling, I run, I walk a long, long time ... I dream of freedom for my lungs.
Never surrender! Even when it seems to be the worst, breathe deeply and know that the biggest crisis passes. Surround yourself with people who have the same problems as you, they will best understand what you're experiencing. Do not hold tight to the prognosis of the doctor about how long you will live, tell yourself that it will be very, very long, despite everything, despite the forecasts. You are the master of your life, not PH.
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Tuulia
01:11:11
Finland
I hope I stay healthy this winter and do work for the establishment of our association here in Finland.
To live a good and healthy life in spite of illness. I wish that there was a cure for PH someday.
Faith, hope, love. And think positive!
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Todor
21:11:11
Bulgaria
1. Faster diagnosis;
2. Registration of new drugs;
3. With widespread use of combination therapy to treat patients.
1. Social policy directed to patients with PH;
2. Expanding a group of patients treated with funds from the state;
3. Reduce the time to obtain the drug by the patient.
Love God and believe in the power of medicine.
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Edi
31:10:11
Switzerland
Ich warte aud eine Operation in Bad Neuheim
Wieder leistungsfähig zu werden
Positiv zum Leben
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Shaye Meyers
07:10:12
United States
To feel better, and not feel so sad.
I want to graduate high school and go to college, I want to live.
Dont give up, never give in to PH.
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Thomas
16:11:13
Austria
Keine Verschlechterung des Gesundheitszustandes.
Großer Traum: Natürlich Heilung.
Realistischer Traum: Stabil bleiben oder Verbesserung.
Einen Rat geben ist sehr schwer.
Aber die Hoffnung sollte man nie aufgeben.
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beverley
27:01:15
United Kingdom
to stay health so i can take my son on holiday this summer.
that there well be a cure.and to see my 10yr old son grow up.
to stay positive and live one day at a time and enjoy it to the fullist.
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KLARA KLANČAR
04:11:11
Slovenia
I want to help people who have PH, help them understand the disease and deal with it.
For people who suffer from PH, it would be to find a cure.
Never give up, have a great will to live, laugh a lot even though it is sometimes hard and live a normal life. I always find a solution even when it seems that it is impossible.
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Ulrike
22:10:11
Germany
Ich möchte noch lange stabil bleiben, damit ich so leben kann wie bisher
Ich möchte noch erLEBEN, wenn ein Medikament auf den Markt kommt, das PH heilen kann.
Konzentriere Dich trotz der PH auf Deine Stärken und Fähigkeiten, anstatt Deine Schwächen zu bejammern.
Verliere nicht Deinen Humor
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Marion
08:11:11
France
be less breathless...
Do not have to always anticipate my fatigue...!
Able to dance and party !
Walking in the mountains... and swim !
take care of yourself...
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Jana
13:10:11
Slovakia
I am on a waiting list for lung transplantation and hope that the operation will take place in the next 6 months. I also hope that I won’t get ill and will be strong enough to handle everything.
In the future my husband and I would like to adopt a baby and, for as long as possible, I hope to be able to see the child grow up. With new lungs, I want to live for as long as possible and travel to many countries and around Slovakia. Overall, I want to have a better life with my family and friends. :)
Never give up...there is still some hope..and you have people who are with :)
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Giuliana
13:10:11
Italy
I hope to be able to totally accept my condition and find a balance between what I’d like to do and what I can do. I wish for the tulips I planted yesterday to be flowering and that I’ll be so busy planning my wedding that I’ll forget about PH. (This is a message for my boyfriend :)
PH can be won simply with awareness. I hope that in the future doctors will identify this disease in a short time, and research will find new therapies for us.
To be strong, but at the same time don't be ashamed to ask for help. To recognise our limitations but to create new possibilities within them.
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Gerry
22:09:11
Austria
Avoid any colds and infections for my daughter and try to have a good of quality of life so I can look after her.
My dream is that a cure is found! Or an effective oral therapy which will work until my daughter is 80
There is hope !
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Izabel
22:01:12
Brazil
I hope to continue with my treatment, I was watching, and enjoying every minute as if it were your last. Hopefully, more effective treatments emerge, to ease our pain.
My dream is to see my nephews grow up happy and healthy, and continue taking care of me as they always do. View Gabriel's new teeth (5), Rafael (8) playing an entire song on the guitar, Sofia (2) ceasing to use the diapers and continue to call me mother, and Mariana (10) speak English. Having the family together forever is priceless.
I would love for all patients with PAH to accept the disease, as it will be our companion forever. Therefore living every minute, every morning, without worrying about what's to come. While respecting our limits and never forgetting that we already have good treatments now, and if it meets the letter, just bring us good results.
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Vanya
15:01:12
Bulgaria
To support the development of the Bulgarian PH association.
I hope that PH becomes a normal illness and my friends who are diagnosed will be cured!
A cure will be found! Never give up! You and people who are with you :)
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Annemarie
31:10:11
Switzerland
Stabilität
Stabilität
Noch bessere Behandlung
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Jasmin
10:02:12
Germany
Mein Zustand ist stabil, ich bin seit Jahren in Behandlung. Ich hoffe einfach, dass alles so bleibt und es mir nicht mehr schlechter geht.
My condition is stable, I am in treatment for years. I just hope everything stays that way and I am not worse off.
Dass es schneller diagnostiziert wird, damit Betroffene sofort die nötige Behandlung bekommen.
That it is diagnosed quickly, so get affected immediately the necessary treatment.
Genießt euer Leben. Jeden einzelnen Tag, jeden einzelnen Augenblick. Auch ein eingeschränktes Leben hat seine schönen Seiten.
Enjoy your life. Every single day, every single moment. Even a limited life has its good sides.
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BETTINA VALERA
15:11:11
Switzerland
Weniger Nebenwirkungen und eine gute Lebensqualität.
Das diese Krankheit irgendwann heilbar ist resp. werden könnte.
Glaube an Wunder, Liebe und Glück, schaue nach vorne und niemals zurück. Geniesse dein Leben in vollen zügen und gib nicht auf.
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Bruno
11:10:11
Switzerland
Ich wünsche mir eine stabile Gesundheit (seit 2000 Lungentransplantiert) damit ich die Mitglieder in unserem Verein weiterhin unterstützen kann.
Die Heilung der pulmonalen Hypertonie.
Nie die Hoffnung aufgeben. Es geht immer wieder eine Türe auf.
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Bozidar
22:01:12
Bulgaria
In the eyes of doctors read my inability to diagnose or at least suggest what health problems. They do not know at what specialist to send me and know my disease specialists. I want to be responsive to my questions.
The doctors are competent and responsive to the problems of patients. Medical ethics is high. Do not see the patient as a walking box, but as an opportunity to save lives. People suffering from PH to be alive and complete. So do I.
In Bulgaria, in that moment, can not treat you. Look for an alternative, to stay alive.
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Thomas
16:11:13
Austria
Keine Verschlechterung des Gesundheitszustandes.
Großer Traum: Natürlich Heilung.
Realistischer Traum: Stabil bleiben oder Verbesserung.
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Daniela
14:07:13
Germany
Leben!!!
Dass ein
Heilmittel gefunden wird!
Früher zum Arzt gehen.
Darauf bestehen, dass ein Echo des Herzens von einem Facharzt gemacht wird.
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angelique
09:09:16
United Kingdom
that Brian will stay alive for as long as possible and that he will receive new lungs, miracles do happen <3
no advice but a wish, i wish everybody with PH the best medication and lots of love and support from family and friends.
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Zuzana
13:12:11
Slovakia
Zlá otázka. Moje plány a potešenia nie sú len v merítku 6 mesiacov. Plánujem celý život. A nikdy neprestanem.
Môj veľký sen je neprestať snívať. Plánujem všetko, čo do normálneho života patrí. Mať milujúceho manžela, krásne deti a šťastný zvyšok mojej rodiny.
Rozmýšľať ako zdravý človek. To prajem tak isto aj ostatným ako aj sebe. Nevieme, čo príde. Ale treba zachovať chladnú hlavu a byť silný.
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Svenja
30:10:11
Germany
mein leben auskosten und hoffen das ph irgendwann so einfaxh behandelbar wird wie bluthochdruck
mein taraum ist, einmal mit meiner familie eine amerika rundreise zu machen
niemals aufgeben!
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Pisana
20:09:11
Italy
To plan a holiday in Belgium over Christmas to visit my family and a few days in the mountains in Switzerland in early January
I hope to be there for my daughter when she graduates from Fashion School in 2013, and to stand up and applaud with pride, I will be overjoyed.
My dream would be to see my daughter's life unfold and to one day become a grandmother. That would be my ultimate life dream
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Wim
05:10:13
Belgium
I hope that I will be well enough to attend my daugther's first communion.
My dream is there is a cure so I can practise sport again and feel healthy. I would like to play football with my son or teach him to ride a bike.
Talk about your fears and hopes with loved ones. Reach out to other patients to help each other and never loose hope!!
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Claes
12:06:12
Sweden
Visit my kids, grandkids, riding my motorbike as much as possible and just enjoy life.
To se my kids and grandkids grow up and have a healthy life.
Try to live as normal as possible, try to stay as fit as you can and think about all positive moments you still have to enjoy.
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Heinz
26:10:11
Switzerland
Stabilität und leichte Besserung
ohne Sauerstoff zu leben
den Humor nicht zu verlieren
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Thomas
16:11:13
Austria
Keine Verschlechterung des Gesundheitszustandes.
Großer Traum: Natürlich Heilung.
Realistischer Traum: Stabil bleiben oder Verbesserung.
Einen Rat geben ist sehr schwer.
Aber die Hoffnung sollte man nie aufgeben.
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Hans
03:11:11
United Kingdom
Stabilität
Heilung
Erfahrungsaustausch in Selbsthilfegruppe.
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Renata
15:01:16
Hungary
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Manuela
21:10:11
Germany
Das es mir etwas besser geht und die Medikamente noch besser anschlagen.
PH soll heilbar sein, das ist mein größter Wunsch.
Mieinander reden und verstehen. Niemals den Mut verlieren, das Leben ist auch lebenswert mit dieser Krankheit.
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Nina
06:11:11
Switzerland
Ich möchte gesund werden und ein Pony haben.
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Mina "minchen"
07:11:11
Germany
das sich der Zustand nicht verschlechtert
das die PH heilbar ist und es nur noch eine Tablette dafür gibt
schwierig
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Jaroslava
24:10:11
Slovakia
Chcem aby sa môj zdravotný stav nezhoršil
Aby som mohla v kľude a pohode vychovávať svoju dcérku a prežívala so svojou rodinou všetky krásne okamihy života
Optimizmus a dobrá nálada je najlepší lekár
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Natalia
17:09:12
Bulgaria
To increase my physical capacity.
My dream is to dance again normally and breathe normally.
Never give up. Together we can do more.
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Hall
30:09:11
Norway
To help my youngest son with his math and SAT studies so that he can be accepted to an economic degree program at a university.
I would love to be able to hold a grandchild in my arms. However, I have told my two sons (24 and 20 years old) not to rush it - they should finish their higher education first. I plan to stick around for a while anyway…
Try not to feel despair. Medicine is advancing and PH patients live increasingly longer lives. Contact long time survivors and learn that it is possible to live long and fulfilling lives despite the disease. Have fun and enjoy life!
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SERVANE
15:03:14
France
vivre normalement
que la médecine trouve le médicament miracle
savourer chaque moment
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Petra
29:10:11
Germany
Ich möchte belastbarer werden
PH sollte heilbar werden. Die Ärzte,die nicht direkt mit PH zu tun haben müßten besser Informiert sein um eine schnellere Diagnose zu bekommen.
Nicht aufgeben,kämpfen
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Aletha
28:01:12
United States
To be able to breathe better and be healthier.
I hope patients are not misdiagnosed as I was. Physcians need more awareness & education.
Take your time rest when you need to. Do not overdue
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Dr. Suyapa Sosa
24:01:12
Honduras
Continue to work in the protocol and making the correct diagnosis
that these patients can receive the optimal treatment fot their disease
there are people who care and wont leave them alone
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Maleen Fischer
13:10:11
Austria
I hope I can help others with PH by showing them how I live with the disease and hopefully I can motivate people to not let PH impact their lives in a negative way.
My biggest dream, and I think I speak for many people who suffer from PH, would be to find a cure that makes living with PH easier.
I always say that I don’t live with PH, PH lives with me. I try not to build my whole schedule around PH and make it the main thing in my life. Of course I am constantly reminded that I am living with this disease, but I never let this give me a reason to think about it in a negative way. I am not "fighting" PH. I am rather working with it and hopefully sometime in the future I can say that I have arranged myself with it to the point where it is only a little part of my life. I hope that other patients can also work with their sickness and not see it as a curse or something that "went wrong" in their life. It is simply our special challenge and with a lot of patience we will eventually find the right way to solve it.
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Silke
19:10:11
Germany
Das mein Zustand noch relativ lange anhält
Wieder gesund zu werden. Und das kann ich durch eine Organtransplatation von Herz und Lunge
Die Hoffnung nie aufgeben und auch hilfe annehmen zu können. Sich mit anderen Patienten austauschen und erfahrungen weitergeben.
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Lynn
27:10:11
Belgium
I hope I'll pass my exams in January and in June. I also hope that I can walk for longer without having to stop because of breathing problems.
I hope I will be able to carry my own children because I really want a family of my own. I would be very sad if I couldn’t have children of my own, my flesh and blood . I also hope that PH can be totally cured in the future as this would me and a lot of other people very happy!
To never give up hope! PH isn't easy to live with, but I believe that doctors and scientists will reach a cure in the future. The sooner the better :-).
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roxane
28:10:12
France
Das ich stabil bleibe, das ich noch besser lerne mit der Krankheit umzugehen, das ich akzeptiere
Que je reste stable, que j'apprends à mieux faire face à la maladie, que j'accepte
That I remain stable, that I learn to cope better with the disease, That I accept
Mein Traum wäre Kinder zu bekommen ! Leider bleibt es nur ein Traum ....
Mein Traum ist ohne leiden zu leben
My dream would be to have children! Unfortunately, it remains just a dream ....
My dream is to live without suffering
Mon rêve serait d'avoir des enfants! Malheureusement, il reste juste un rêve ....
Mon rêve est de vivre sans souffrir
Es ist schwer für mich Rat zu geben....... Aber versucht euren Mitmenschen so viel wie möglich von PH zu berichten damit sie es verstehen und auf euch geben können.
Ich danke den Menschen die sich um ph Erkrankte kümmern und ihnen beistehen.
Il est difficile de donner des conseils ....... Mais essaie autant que possible de parler de PH avec votre proches afin qu'ils puissent le mieux comprendre et prendre soin de vous.
Je remercie les personnes qui se soucient de personnes souffrant de ph et de les aider.
s hard to give any advice ....... But try to share with people that are close as much as possible about PH so they can understand it and can take care of you.
I would like to thank the people who care about ph sufferers and are there for them.
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Peter
19:10:11
Germany
Noch zu leben
Keine Träume mehr
Auf exakte Diagnose und Behandlung drängen
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Martine
20:10:11
France
Que la recherche trouve le médicament qui nous guérira.
Guérir, vivre dans un monde dont le moteur serrait l’humain car bientôt il n’y aura plus de place que pour ceux qui on l’argent mais il y aura personne pour cultiver, préparer les repas et même les soigner !...
Rester malgré tout optimiste profiter de la vie même si elle doit être courte. La maladie nous a appris qu’il y avait des choses importantes dans la vie et d’autres qui le sont moins apprenons aux autres à faire le tri.
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valeria
11:10:11
Italy
spero che le cure vanno sempre migliorando e che noi con queste cure sconfiggiamo questa brutta malattia
che sto bene perchè o dei figli piccoli da crescere
di avere tanta forza e fede perchè con lo spirito giusto le malattie vanno combattute più in fretta
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Andrea
06:11:11
Switzerland
Dass es den Mädchen weiterhin gut geht und sie sich gut entwickeln können.
Dass die Krankheit heilbar ist und unsere Mädchen gross werden können.
Versucht den Moment zu geniessen, wie unsere aufgeweckten Mädchen.
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Michael
20:05:12
Switzerland
Gute Lebensqualität und Selbständigkeit.
Geniesst jeden Tag und verliert nie die Hoffnung.
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Pompiliu
08:10:11
Romania
To be able to contact all the PH patients from Romania, in order to enroll at least 50 members for the Romanian Association. At the same time, I will put my efforts to extend the National PH Treatment Program for all diagnosed patients.
To reach the day when our main PH activity will be celebrating anniversaries of the discovery of a PH cure.
Never lose hope, always search for support, never give up fighting for a better life.
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Jennifer
14:11:11
United States
To feel better
To be a nurse
To never stop taking your medicines
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Martina
21:10:11
Germany
Ich hoffe, dass mein Zustand so stabil bleibt
Dass alle Ärzte über die Krankheit Bescheid wissen, sie u. damit die Menschen ernst nehmen u. die Krankheit selbst heilbar wird.
Auf alle Fälle sich im Selbsthilfeverein anmelden, um sich Informationen u. Hilfe zu holen. Damit kann man viel besser mit der Krankheit leben.
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Nadine
19:02:14
France
Etre toujours entourée de mes amis
Pouvoir refaire de lointains voyages
Profiter de chaque instant
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Nils-Paul Skåra
20:10:11
Norway
I hope my father continues to be in the healthy and stable condition he is in today.
I dream for a cure to be found!
Spend time on what makes you happy.
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Wendy
09:10:11
United Kingdom
That everyone with pulmonary hypertension is cared for by specialist multidisciplinary teams, has access to the full range of PH therapies and psychosocial support to achieve the best possible outcomes
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Izabel
22:01:12
Brazil
I hope to continue with my treatment, I was watching, and enjoying every minute as if it were your last. Hopefully, more effective treatments emerge, to ease our pain.
My dream is to see my nephews grow up happy and healthy, and continue taking care of me as they always do. View Gabriel's new teeth (5), Rafael (8) playing an entire song on the guitar, Sofia (2) ceasing to use the diapers and continue to call me mother, and Mariana (10) speak English. Having the family together forever is priceless.
I would love for all patients with PAH to accept the disease, as it will be our companion forever. Therefore living every minute, every morning, without worrying about what's to come. While respecting our limits and never forgetting that we already have good treatments now, and if it meets the letter, just bring us good results.
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Giuseppe
15:11:11
Switzerland
Stabilität und Lebensqualität
Gesunde Menschen haben viele Träume, kranke nur einen.
Die besten Ratschläge kommen von den betroffenen Menschen, die unter dieser Krankheit leiden.
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Kristy
19:02:12
United Kingdom
I am already on borrowed time (given 2-4 mths 08/10 when I had heart failure). I am listed for a heart/double lung transplant. I hope to have that transplant and survive it in order that I may spend more time with my daughter (now 2)
Spend more time with my 2 year old particularly given she was born 10 weeks early and I lost her brother when I was 8 months pregnant
A positive attitude helps so much. I was told I would be dead by Christmas 2010. I was told i would not make it onto the transplant list. Don't give up.
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Carl
29:09:11
United States
I am hoping to remain engaged in the fight against PH to my fullest capacity.
I dream for the cure...and some fine day we will have it and end this suffering.
You are not alone in this fight. Join the Pulmonary Hypertension Association of your choice, (many countries have them), and help us fight against this disease. Do not take this disease lying down, never quit, all of us can do something regardless of our conditions. Together, we will win and find the cure.
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Margit
23:06:13
Austria
Dum spiro, spero. Solange ich atme, hoffe ich.
Es wird für uns eifrig geforscht!
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Yana
04:03:13
Russia
I'm going to take part in orgonization of PH day in Russia, then visit the Black Sea with my family in august.
my dream is to be happy!
nexer give up!
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Stacey
27:09:11
United States
to be able to participate in a field trial of the implanted medtronic pump
to be as independent as possible and for the benchmark of life expectancy to continue to go up.
Try to be as active as possible. I have continued to work f/t and believe that along with my medical management, that the act of getting up every morning and having a routine has kept me active. Working with others less fortunate than I (I work in healthcare) also keeps things in perspective.
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vittorio
12:10:11
Italy
Spero che le informazioni sull'IP arrivino a tutti i livelli (medici e sociali) per consentire una diagnosi precoce
Sconfiggere l'IP con una semplice pasticca
INSIEME SI PUO'....non nascondiamoci.
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Emmanouela
04:03:13
Greece
the best possible care and support for my 5 year old son
a pharmaceutical cure will be discovered!! Until then I dream that ALL people will realize the importance of organ donation!!
Find a support system that will help through the difficult emotional days! Share your knowledge and experiences and emotions with others!
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Daniel
06:11:11
Switzerland
Das die Lebensqualität für unsere zwei Mädchen weiterhin so gut bleibt.
Das ein Medicament erforscht wird, dass meine zwei Mädchen geheilt werden.
Geniesse den Moment.
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Nora
07:11:11
United States
I hope my pressure numbers get better, and I could climb stairs.
To get in the pool and swim again, and I dream a cure for PH
Keep hope, never give up
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Caerys
01:04:13
Spain
To maintain my condition at the level it's at now
To dance at my childrens' eighteenth birthday
PH is life even though it's not as we knew it. Live that to the fullest you can otherwise you will be wasting something precious
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Daniela
11:01:12
Switzerland
Ich hoffe, dass es meiner Mutter mit der Einnahme neuer Medikamente besser geht.
Die Heilung der Pulmonalen Hypertonie
NIE die Hoffnung aufgeben und Unterstützung bei Freunde und Familie holen.
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Yosef
13:10:11
Israel
Now that I have regained my health, I plan to continue working to strengthen the PH community in Israel and internationally.
I hope for a future when: All groups at risk are identified, PH is promptly diagnosed, uniform standards of care including all therapeutics are accessible across borders, and an international data bank to assist research has been established.
Be hopeful, seek community, strengthen community.
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René
13:11:11
Switzerland
Dass meine Frau weiterhin Ihr Training macht. Weil es Ihr sehr gut tut.
Dass die Krankheit heilbar wird oder auf gutem Weg dahin.
Sich einer Gruppe anschliessen. Positiv denken und den Mut nicht verlieren
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Sara
06:11:11
Switzerland
Ich hoffe, dass ich in diesem Winter keine Lungenentzündung bekomme.
Ich möchte gesund werden.
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Jeannette
31:10:11
Switzerland
Dass die Patienten, die ganz dringend Hilfe brauchen, die auch wirklich bekommen!
Dass sobald wie möglich allen geholfen wird, vorallem denen die schlimme Diagnosen haben.
Steht auf, teilt euch mit, nehmt an Selbsthilfegruppen teil, dass gibt Mut. Versucht euer Leben so gut wie möglich zu geniessen. Dazu schicke ich euch ganz viel Kraft.
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Michelle
05:10:11
United States
Having just been released from the hospital for multiple massive bilateral pulmonary embolisms, I am hoping that some of my functionality will return to me in the next six months, that my Coumadin therapy will stablize and I can gain back a little bit of what I've lost the last month by being in the hospital.
The ultimate dream is that I wake up one day and discover that the PAH diagnosis was an accident, or that it was just a temporary thing caused by something else. While I know this isn't true and is just my denial, I hope a cure, easy treatment, or preventable cause can be found and given to all those who hope for the future, who long to live with passion.
Denial doesn't prevent PH... I ought to know. Learn all you can, read all you can, but don't let the PH become who you are. It's just something you have; who you are is still there, and you should let it always shine through!
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MAKS
05:11:11
Slovenia
To lose some weight and be back at work full time
To attend the World Cup 2014 in Brazil
Enjoy every day and share your experience with other people
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Barbara
07:02:14
Austria
NUR den Haushalt schaffen
Stabilität,
Der Weg ist das Ziel. Gib niemals auf
Wenn Du glaubst es geht nicht mehr kommt von irgendwo ein Lihtlein her.
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Laura
10:01:12
Germany
Dass meine Medikamente weiterhin so gut wirken und sich die Nebenwirkungen in Grenzen halten.
Dass PH Patientinnen ohne zusätzliches Risiko Kinder bekommen können und dass die Krankheit geheilt werden kann.
Schäme dich nicht, sondern erzähle allen Bekannten von deiner Krankheit damit sie bekannt wird und genieße das Leben auf die Weise, wie es dir möglich ist.
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Gerdi Späth
23:11:13
Germany
Ich hoffe auf ein wirksames Medikament damit ich meine Leistungsfähigkeit ein wenig steigern kann
Das PH heilbar wird und dass es für junge Frauen mit PH möglich sein wird eine Familie gründen zu können
Mein Rat ist, dass PH Patienten sich einer Selbsthilfegruppe anschließen sollten bzw. selbst aktiv werden
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Ursina
31:03:12
Switzerland
Bessere Lebensqualität
Einfachere Behandlung
Kämpfen
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Annie
11:12:13
Netherlands
Goed de winter doorkomen, blijft vervelend die kou.
Een medicijn wat de kwantiteit en kwaliteit van het leven verbetert.
Gisteren is geweest, leef het leven vandaag en morgen is er weer een nieuwe dag.
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Maria
31:10:11
Switzerland
Auf Besserung
Gesund werden
Positiv in die Zukunft schauen
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Jonathan
08:03:13
Germany
Ich hoffe, dass die Nachteile, die sich durch PH ergeben, sich in jedem individuellen Fall (wie auch immer) minimieren.
...dass eine Möglichkeit gefunden wird PH komplett zu heilen.
Es ist kein einfaches Thema...
aber redet darüber mit dem oder der Betroffenen!
Überlegt euch gemeinsam wie ihr zusammen damit umgehen wollt.
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Barbara
03:04:12
Switzerland
Das die PH bei allen Ärzten bekannt ist
Das die Zusammenarbeit Patient - Arzt offen ist. Aussagen wahrgenommen werden
Wenn äussere Bedingungen Rahmen einengen, die inneren Rahmen = Träume umsetzen
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sofie
14:11:11
Sweden
That the drugs will work
To have one more child...
Don’t give up
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ЖОРО
10:11:11
Bulgaria
ПО ЛЕСЕН ДОСТЪП ДО ЛЕКАРСТВА
ДА НЕ СЕ ЧУВСТВУВАМ ИНВАЛИД
ДА НЕ СЕ ОТЧАЙВАТ - ЩЕ СЕ НАМЕРИ И ТЯХНАТА ЛИЧНА КОМБИНАЦИЯ ОТ ЛЕКАРСТВА
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Jonathan
29:01:12
Germany
Meine Hoffnung ist, dass bei allen Betroffenen die Medikamente gut wirken und sich die Nebenweirkungen in Grenzen halten...
...dass es heilbar wird und dass Betroffene - ohne Probleme - Kinder bekommen können
Gib nicht auf!
(Never give up)
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Katrin
27:10:11
Germany
Ich möchte weiterhin so stabil bleiben,damit meine Lebensqualität so bleibt wie sie ist.
Ich wünsche mir das PH heilbar wird und ich es nicht weiter vererbe.
Man soll die Hoffnung nie aufgeben.
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Susanna
03:11:11
Switzerland
Stabil bleiben und Verbesserung der
Leistungsfähigkeit.
Dass Medikamente gefunden werden die eine
Heilung bringen.
Einer Selbsthilfegruppe beitreten um Erfahrungen auszutauschen.
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Herbert
31:10:11
Switzerland
Stabilität meiner Gesundheit
Dass ich möglichst lange eine gute Lebensqualität habe. Heilung der pulmonalen Hypertonie oder neue Medikamente ohne Nebenwirkungen.
Immer Hoffnung haben und die Ärzte hinterfragen.
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Jaana
22:10:11
Finland
To establish an active PH-association in Finland to support and help patients to improve their quality of life, and raise awareness of PH in my country.
For all PH patients to be able to lead fullfilling lives and make their dreams come true. To see my newborn granddaughter grow up, and for me to enjoy my life to the fullest every day.
Never give up, and always try to see the good things and people in your life. "Every cloud has a silver lining!" I have been living with PH for 15 yrs, - and still plan on doing a lot of wonderful things!
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Irene
04:11:11
Spain
Mi vida está claramente marcada por la PH. No sólo porque sufro la enfermedad sino porque llevo más de 7 años dedicando parte de ella a la asociación de pacientes que fundé. En este duro trabajo se mezclan decepciones y alegrías. Cuando hablo como paciente, no sólo pienso en mi, y en mi vida con PH, también en todas las personas que forman parte de la asociación y que me hacen llegar día a día sus problemas y dificultades, por eso, mi discurso siempre es muy reivindicativo pero a la vez esperanzador. Espero lograr que a pesar de mi enfermedad, pueda celebrar el dia latino de la PH, responder a esa invitación para que esté presente en ese día tan importante y por supuesto, en 6 meses conseguir el mayor logro de la asociación española: la primera celebración del Día Mundial de la PH. Un gran reto!!
Como el resto de mis compañeros de PH, mi sueño es encontrar en un futuro cercano una cura para la enfermedad. Y también que las asociaciones crezcamos lo suficiente para poder participar en los organismos que toman las decisiones que afectan a nuestra salud.
Que acudan siempre a asociaciones de pacientes para compartir la experiencia y sentirse apoyadas en el duro momento del diagnóstico. De esta forma recibirá el apoyo y la información necesaria para poder enfrentarse a la enfermedad. Y hacerles llegar la motivación para pelear por un médico que conozca la enfermedad y por un buen tratamiento que le ayude a mejorar su calidad de vida. Nunca aislarse, hablar de nuestro problema y hacer saber que aunque nos sentimos solos, NO lo estamos.
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Ursula
31:10:11
Switzerland
Weiterhin stabil zu bleiben und mich endlich Mal für die Reha in Heidelberg anzumelden, damit ich lerne im richtigen Mass zu trainieren.
Dass es Medikamente gibt, die PH heilen.
Die neue Situation so gut wie möglich zu akzeptieren, aber nicht zu resignieren. Gleichgesinnte zu suchen um Erfahrungen auszutauschen.
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ursula
04:01:12
Germany
Das die Luftnot ncht durch eine neue Lungenembolie stärker wird, das sich meine Belastbarkeit verbessert.
Das sich das Lungengewebe erholen würde und ich wieder ein aktiveres Leben führen könnte, der Schaden durch die Medikamente sich in Grenzen hält.
Durchhalten und kämpfen, wenn alle Ärzte Ihnen sagen, Sie spinnen. Vertrauen Sie Ihrem Körpergefühl - das lügt selten! Wenn Sie lange genug suchen, finden Sie den EINEN ARZT, der Ihnen glaubt - doch es ist ein langer, langer Weg.
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Gabi
31:10:11
Switzerland
Ich wünsche mir leistungsfähiger zu werden. Ich hoffe mit meinen Aerzten eine Therapie zu finden, die mir entspricht.
Mein Traum ist es selbständiger und angstfrei aktiv am Leben teilzunehmen. Ich möchte mit meiner Tochter über eine Wiese laufen und die PH als dunklen Schatten in meiner Vergangenheit betrachten können.
Es gibt gute und weniger gute Zeiten. Aber wir machen immer weiter Schritt für Schritt.
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Niklas
28:10:11
Norway
Finish my Maths exam, as well as the SAT test in December. Also spend as much time with my father as I can while I am still living at home.
Finish a major in Economics and work in a government related job. Being able to contribute to medical research, and ultimately find a cure for PH through government funding, is one of my main motivations for pursuing this career.
Live life with your loved ones as if the disease is non-existant. A positive mindset and an appretiation for life is the most effective medicine there is.
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Markus
10:01:12
Germany
Ich hoffe für Betroffene auf Fortschritte in der Forschung hinsichtlich diagnostischer und therapeutischer Möglichkeiten.
Für Betroffene ein Leben ohne Einschränkungen und besonders die Möglichkeit, ohne zusätzliches Risiko Kinder bekommen zu können.
In keiner Hinsicht: Wir sind nicht alleine!
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Silke
10:02:13
Germany
Das sich mein zustand nicht verschlechterz
Ich hoffe das es eine möglichkeit gibt auf heilung . Das die Forschung fortschritte macht
Nicht den Lebensmut zu verlieren und immer Hoffnung haben.
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Annelie
06:10:11
Sweden
Jag hoppas på att få tillbaka lite av min ork och kanske kunna hjälpa min kära make här i hemmet. Orka komma tillbaka till den jag var innan jag blev sjuk, kanske rent av ha middagsgäster igen.
Jag vet ju att jag inte kan bli frisk som det ser ut idag, men jag önskar att allt stabiliseras. Jag vill kunna se mina barn (20 och 23 år)skaffa sig ett vuxet liv med jobb och familj. Ha ork att finnas för dom och eventulla barnbarn i framtiden. Kunna mysa med maken och ta hand om honom.
Kämpa, varje dag är en gåva till oss alla. Försök att vara glad och possitiv för det är till stor hjälp till dom dagar när man har det som värst. Skratta med din familj och låt inte sjukdomen vara ett hinder, försök att följa med i livet med ett leende än om du vet att du blir trött i efterhand så kan ett restaurang besök betyda massor.
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Fredrik
14:11:11
Sweden
To be able to finish my first year at university.
To have a child born without PAH and to get a job where I don’t have to be constantly reminded about my PAH.
Try and look beyond having PAH and focus more on what you can do with your own life from here on. Only you set the limit for accomplishment.
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Franz
20:05:12
Austria
keine Verschlechterung meines Gesundheitszustands
effektivere Medikamente, dadurch auch niedrigere Tagesdosis
Nicht aufgeben und finden Sie sich mit der momentanen Lebensqualität ab, besser wird es leider kaum noch werden.
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diane
11:10:11
Netherlands
Since losing 16 kg, I have been able to cycle with my little boy and go for long walks, which I am very happy about. In the next 6 months, I hope to do more of what I’m already doing now.
My dream for the future is to get married and see my little boy grow up.
Live life day by day and enjoy what you are able to do with people who are special to you.
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Adriana
28:10:12
Germany
Ich wünsche mir für sie, dass ihre Medikamente besser auf sie eingestellt werden, so dass sie nicht mehr unter den Nebenwirkungen leiden muss.
Das diese Krankheit heilbar wird, damit u. a. ermöglicht wird, dass Frauen Kinder bekommen können.
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Bruno
23:11:11
Germany
Erhalt eines stabilen Verlaufs um viel mehr als 6 Monate beruflich tätig zu bleiben.
Martina und ich legen die Hoffnung auf ein Medikament zur Heilung von PH, zumindest Erhaltung oder Verbesserung der körperlichen Leistungsfähigkeit.
Mitglied in den PH-Organisationen werden, Informations- und Erfahrungsaustausch ermöglichen, die Aktivitäten unterstützen, sich zu Hause fühlen, Solidarität üben.
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Mary
14:10:11
Italy
Spero sempre che si trovino nuove cure per poter stare sempre meglio!!!
Riuscire ad adottare un bimbo e potermi prendere cura di lui. Sto già facendo tutte le pratiche di adozione.
Dobbiamo lottare sempre perchè la vita è bellissima!!!
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Patrick
10:10:11
Austria
I am hoping to support PH's awareness significantly.
I want my sister to be cured, or at least have such a good quality of life that she can have a completely "normal" life.
Please tell your friends about PH. The more people talk about it... the more support it gets.
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SERVANE
15:03:14
France
VIVRE PLEINEMENT
PROFITER DE CHAQUE MOMENT QUI PASSE
QUE LA MEDECINE TROUVE RAPIDEMENT LE MEDICAMENT MIRACLE
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Gjurgica Kjaeva
10:09:15
Macedonia, The Former Yugoslav Republic of
To teach patient more about disease and they lives.Hope to registration of new drugs; use of combination therapy to treat patients.higher collaboration with the healthcare professional and the government and the ministries of health and disability.
To have appropriate drug that is currently required for my condition.
To spend the day on my feet more than in a bed.
Live your life, try to do at least what you can, Travel,do not carry about small things,
look at the forest instead of a tree, enjoy the beauty of life.
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FABIO
11:10:11
Italy
UNA CURA BEN DEFINITA
DI ELIMINARLA DA QUESTO MONDO O ALMENO DI FARLA CONOSCERE E DIAGNOSTICARLA SUBITO
DI LOTTARE FINO ALLA FINE
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Migdalia Marrero
21:10:11
United States
I hope to be able to breathe easier.
I dream the cure will be found.
If you think you have asthma, make sure it isn't PH. Refer to your pulmonologist for a proper diagnosis.
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Raja
27:10:11
Belgium
I just want to achieve that i won't be needing the 'Remoduline' no more.
I want to get a great job! I also want to have a family and hope to have kids, even though I have been recommended not to. But,there are many ways to have kids.
Having PH is difficult because nobody takes it seriously and you are the only one who understands it. Just keep fighting - there are going to be many ups and downs in your life but you have to keep going! There is a reason that you have it, you have it and you can’t do anything other than take your medications and live healthily!
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Kateřina
19:10:11
Czech Republic
I hope that winter will be mild and I'm not sick. At the present time I feel good. I'd like to feel good for a long time. I love the sun and heat. I have the energy to my activities.
My dream, and I think I speak for many people with PH, would be to find a cure that makes living with PH easier. That treatment is available to all. And I want health for my family who are a huge support to me. Especially for my three nephews because they are my sunshine, they give me energy. (Ondra is the youngest in the photo with me)
Hope and Humor
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Thelma
05:12:11
Finland
stay healthy and continue to live a normal life.
a cure....
stay positive, live one day at a time and enjoy it to the fullest.
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Ulrike
20:10:11
Germany
Ich wünsche mir einen stabilen Verlauf der PH.
Mein Traum ist es gesund zu werden!
Gebt nie die Hoffnung auf! Und ich habe schon viel über mich, meine Freunde, meine Familie und das Leben gelernt durch die PH.
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Ana Caroline de Sousa Rolim
23:01:12
Brazil
I hope to get a little bit better, because I´ve been feeling very tired lately.
That one day we can find the cure for this devastating disease.
Try to do all you want to, because tomorrow is unknown. Don´t keep yor dreams closed, make them reality!
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Yvetta
12:10:11
Slovakia
Chcela by som prežiť jeseň a zimu bez virózy
Môcť žiť normálny život, chodiť po horách bez zadýchania, byť pri všetkých dôležitých životných medzníkov mojich detí
Nikdy nepodľahnúť depresiám, Žiť s optimizmom, veriť, že všetko bude dobré. To je to najdôležitejšie.
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Marion
24:10:11
Germany
Ich wünsche mir einen stabilene Zustand
Diese Krankheit sollte oder muß heilbar werden
Teilnahme an einer Selbsthilfegruppe
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Ieva
12:10:11
Latvia
I would like to overcome constant tiredness.
My dream is for awareness of PH to be improved in Latvia.
Love yourself and the world
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Rima
07:03:12
Lebanon
My Husband was recently diagnosed with PAH, he was a CCB responder. i hope that in the coming 6 months, he will prove that he is a long term responder and we can rest assured that he will have a normal full life while on CCB
like any person who has PH, or related to a PH patient, i pray deeply to have a cure soon
Pray and Pray, God listens and never leaves anyone with deep faith
and please keep the faith that soon there will be cure and u are going to be ok
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Luisa Sciacca della Scala
22:11:11
Italy
Spread awareness on PH and improve cooperation between PH major Centres and doctors on the territory
a CURE, no less! For everybody and at a reasonable price. Why not, it is possible!
accept the help other patients can give you through the Association and help yourself others because your experience is worth a lot. Share your burden and it becomes lighter.
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Irena Metodieva
16:02:12
Bulgaria
Improving my natural state. Enough medication for everyone. Finding new means of prevention and diagnosis.
I dream of a real cure. Accessible to everyone. I dream that nobody gets sick from this severe disease.
Be strong, fight, because life is a struggle.
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Martin
26:10:11
Switzerland
Durch die Operation (Thrombendarteriektomie) wurde ich "Gesund". Ich wurde am 17 Dezember 2008 operiert.
Dass es so bleiben wird, muss aber jedes Jahr 2 x zur Kontrolle
Keine Angst haben vor einer Operation, es kann nur besser werden.
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Eva-Maria
10:01:12
Germany
Ich hoffe, dass die Forschung weiterhin Erfolge bringt.
Mein Traum ist, dass meine Tochter trotz PH eine Familie mit Kindern gründen kann.
Das Leben ist auch mit Krankheit lebenswert.
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Cristina Nates
18:01:12
United States
I hope we can have 10 more people to be part of our Hispanic support group in Miami, Florida in the next 6 months.
I dream we can have a cure for this rare disease.
To struggle for your lives, don't take NO for an answer, never give up. Look for different opinions, until you get to the right Doctor.