HomeWhy the patients need the PHA...
And why we need your support!
”When I came across the PHA website, I cried. I couldn't believe so many people understood exactly what I had been going through all my life.”
Colleen, 32, diagnosed at 9 months old in 1975
“I am the parent of a child with pulmonary hypertension. The PHA has been an invaluable resource for my family. Through the PHA Patient Survival Guide we have become better educated about pulmonary hypertension and the treatment options. The website run by PHA has helped us access information about pediatric pulmonary hypertension specialists and the latest advances in medication…Because pulmonary hypertension is such a rare and challenging illness, PHA enables our family to feel connected to a community and resources that otherwise would not be possible."
Lois, mother to 13 year old Amelia, diagnosed in 1998.
“I was terrified and couldn't find any kind of information but this site that could ease my fears… I truly don't think I would be where I am today if it was for this site. I'm so thankful for it, and for what it provides for someone like myself.”
Liz, 43, awaiting diagnosis
“I had never heard of pulmonary hypertension. So I came home and got on the Internet. When I searched for PH, the first site told me I was going to die! When I got to the PHA site, I found a great resource. I started finding out there were treatments and hope for a somewhat normal life span… I have gone to the PH Association website almost daily, and sometimes more than once a day. ”
Ruby, 53, diagnosed in May 2007
“Finally because of PHA there was light at the end of my tunnel and I was given hope of living a longer life… Because of PHA and all the accurate information that is on there we are able to have hope for the future, and we are also able to help others just being diagnosed with this disease to see that the other information you find is not all correct… It has been a true blessing to me to have found PHA.”
Sheila, 47, diagnosed in 2006
"PHA had answers when no one did. Because of where we live, there are no PH specialists in our area. Therefore, we could not get the answers that we needed when Bailey was diagnosed. Facts and information on the webpage and the discussions on the boards provided answers we needed. With the advice, love, support and understanding of others that are in your exact shoes, we have found a way to get through the darkness of this disease and see the light our daughter offers each day."
Melissa, mom to Bailey, age 3, diagnosed at 15 months
“It has helped me SO much to know how other people handle what I’m going through. A lot of times, posting to the message board helps me figure out what is "normal" and when to call my doctors… In my experience, no matter how great your medical team is, they may know how things are supposed to, or usually happen, but none of them has the experience of actually living with the symptoms and side effects of dealing with all this daily.”
Pam, 41, diagnosed in 2004
“The PHA has been invaluable to me in organizing a PH support group in my area. They are so helpful with ideas, mailings, and support materials. I have also had the pleasure of attending one of the seminars co-sponsored by the PHA. You might say that the PHA puts a world of information and help right at our fingertips… it's just a great feeling knowing that there is a whole organization working just for me”
Susan, 55, diagnosed in 2001
“Due to PHA's help, I am over the "why me?" woes, learnt a lot by reading the Survival Guide and thru their FAQ's and medical journals… Thanks to PHA my fears are eliminated and I feel confident that there will be a cure in the near horizon. If it was not for PHA and the staff that works there along with volunteers who have been affected by PH, I have no idea if I would be alive today!
Nita, 50, diagnosed in 2004
I love the PHA website.I have met so many PHriends.I love the boards and the chats. It really helps to know that someone else has been through or going through what you are. Most people in the "real world" have no clue about PH! It is so great to be part of this great PHamily!
Jen, 34, diagnosed in 2006
“Support for all chronic illnesses is very important, particularly a rare one like PH. Being able to get and give tips to live a full new life is important. Finding a new normal is challenging, only phamily understands that type of road block. Reminding ourselves and others that a good life doesn't always come in a good body. There is always Someone available...always.”
Tara, 29, diagnosed in 2007