The Pulmonary Hypertension Association (PHA UK) is the only charity in the UK dedicated to people with the rare disease, pulmonary hypertension (PH) and their families.
Pulmonary hypertension, PH for short, is a rare, life limiting condition that causes high blood pressure in the blood vessels connecting the heart and the lungs (the pulmonary arteries).
Visit the website: www.phauk.org Or get involved in PHA UK's public policy campaign to drive change: www.phocus2021.org/
My doctor in Philadelphia PA, USA has started giving this to s few patients. I’m hoping to start it in the next few months. Praying it works and that everyone gets access to it💖
@@pha_uk Thank you 😊 I’m praying this and other drugs can help at minimum with more function and or a cure 💖 I was diagnosed at age 11 , I am now 53. My life expectancy was age 18. I am thankful to all the doctors and people who have done research for this disease and others like it💖
Your football analogy is stupid. I don’t know anything about your sport so using the drugs names and their mechanism of action would have helped me Your presentation was useless to me. It was incredibly unprofessional.
Wow, your pre diagnosis story is a lot like mine. I had been complaining for years about my shortness of breath and was ignored and placated, so I blamed myself. When I finally went into full blown heart failure it was too far advanced for just oral medication. In the 6 years since diagnosis I’m on o2 24/7 and on 3 different medications one which is IV and I’ve been on death’s door 3 times. Please remember to advocate for yourself if you feel your being dismissed get a 2nd opinion.
I was diagnosed at age 11. I’m 52 now and my heart has normal function. I’m on Veletri and tracleer. Sotatercept was released in March in USA. The first drug that treats the disease and not just symptoms. I hope to start it this year. The side affects of my current meds are dibilatating. My life expectancy was age 18.
Hello Kate, I have just watched your video. A lot of what you said resonated with myself. I am still coming to terms with having PH. I do not push myself physically, and take one day at a time. Take care.
This see seems much better than the one my doctor has. They make me put this band with a probe on my head and then we walk until a set time. If I can’t finish, then I have to start again. Which makes zero sense because then I try to control my pace so I can finish. Because if you have PPH you already have limited exercise ability 🤷🏼♀️🤦♀️
I hope you are still ok Scott. I really do. I have pulmonary hypertension and finding out can be a shock. The first time I found out I was worried about not being around to see my kids grow up. I hope you are still going strong.
I hope you are doing better 😞🙏I been having shortness of breath for like 5 months ago I first went to the emergency room and an ecg and chest X-rays and on my diagnosis said tachycardia right heart enlargement chronic pulmonary artery hypertension to be honest I’m scared
I been out of breath for the last 5 months my belly is swollen like if I’m 7 months pregnant 😞my legs my face are also retaining lots of fluid my husband took me to the emergency room on august of this year and that day I was diagnosed with tachycardia right enlargement of the heart chronic pulmonary artery hypertension and on October I was also diagnosed with Non alcoholic fatty liver disease I’m so scared 😟
I hope you start feeling better ❤🙏I been diagnosed with chronic pulmonary artery hypertension at the ER I will demand a right heart cath this time I already had a left heart cath a week ago for a blockage in my heart i been having difficulty breathing and I’m scared
Oh, Carole, this was my story too: Diagnosed with asthma when I was 50, and put on asthma medication that didn't quite work. 10 years later, I went to a lung specialist and said that I felt I was getting enough oxygen when I breathed! She listened to me, and with tests, was able to diagnose it as IPAH. Things have been so much better, these last 7 years, with the specific PH medications that I am on. Thank you for sharing your story. Much love to you ♥♥♥
I live with this every day I went for 2 and a half years with nobody listening to me , I end up in ICU before being diagnosed with PH I am now on oxygen 24 hours a day and use a wheelchair out of the house. It is a complete life changing disease of which there is still little understanding, I am still trying to come to terms with it all, however I now have an excellent team of experts around me but nobody knows what the future holds. Good luck to you Julie x
Hi does anybody know with this drug,will dr allow patient to get pregnant?i was diagnosed when i was 25 years old but not im already 32 and wanting to get pregnant
I was diagnosed this year with PAH and my life changed forever, I though 6 months was harsh but you say 8 years? I can't even imagine a life with these horrible symptoms for 8 years. sorry your symptoms are still harsh. are you doing Tyvaso? you can pro with echo eamination,CT etc....
Thank you My husband of 30 yrs has this and we are young..I went on goggle and got scared with the life expectancy numbers..How long have you had this if you don’t mind me asking
I am diagnosed really fast, I'm still doing many things just can't hurry. Using stairs also tiring but 5 minutes later I'm fine. The doctors I met they give me sign i'm still fine. There was no "scary words" maybe because I'm still look okay. Just feel hurt smtimes
Diagnosed last year but I felt the symptoms about 10 years ago, I also have ASD. Just accept it. I feel more ease now. Life still go on, but now I just take it slow every single step. One I feel rush, then it getting worse
This is excellent! Thank you so much. I found it very helpful, particularly differentiating activity and exercise. Also the advice of varying walking speeds rather than stopping to ease the breathing. We are all different, as you so clearly explain, so we gently learn our own limits and scope. My activities, exercise capacity & quality of life have vastly improved since beginning to include exercise a year ago. From a Walking 6 minute result of 99 I have gradually improved to 275 & fully expect it to be a higher number on the next clinic visit! Thank you for your work and encouragement!
