July 26, 2018 at 7:27 pm #13016Kathleen ShefferParticipant
Since pulmonary hypertension (PH) is often associated with other diseases, patients often connect with additional communities outside the PH community. For instance, @brittany-foster and I were born with congenital heart disease (CHD) and have befriended others with CHD through different organizations.
I met some of my closest friends while attending a summer camp for kids with heart disease, Camp Taylor. Since my transplant, I’ve met people with cystic fibrosis (CF) who have also had lung transplants. Talking with people with CF like @brad-dell, I’ve discovered many similarities between the diseases and the life experience of patients.
Brad and I were talking earlier this week about this very topic. He mentioned that patients with CF find commonalities with patients who have cancer, and the two communities have historically interacted quite a bit.
Pulmonary Hypertension News is one of many sites published by BioNews Services, and I’ve met other patients from those sites while working for BioNews. Charlene Marshall writes for Pulmonary Fibrosis News, and manages their forums. Topics she writes about have been relevant to me, and she has expressed interest in learning more about my experience with transplantation.
Have you interacted with other disease-based communities? Have you found other people you can connect with that don’t have PH, but understand your health concerns?
July 29, 2018 at 7:51 pm #13048VKParticipant
Being in the rarest of rare category, I have plenty of experience interacting with disease communities online.
For a living, I also research – using online venues – daily issues patients with certain rare conditions face (FYI: I don’t research these boards or any other board I’m a member of). My research is about rare autoimmune disease, and as we get our publications on, I’ll share links to the articles we’re doing.
I think that venues like this are indispensable support for patients who can’t even seem to get understanding from their own providers.
July 30, 2018 at 9:34 am #13057Brittany FosterKeymaster
That’s awesome that you do your own research. It’s so hard when some in the medical community don’t provide us with these resources. National organization for rate diseases has been helpful with information regarding some of my conditions too. It’s great that we can find support and connections with others who are going through something similar and share helpful resources. I love the empowerment that comes along with helping one other advocate for themselves.
October 15, 2018 at 1:18 am #14255Vanessa VaileParticipant
I keep writing replies and losing them by some unfortunate keystroke combination that wipes the compose screen and reloads the page. Call it auto-un-save. Eventually I may remember the combo so I can avoid it. Until I am determined to post something.
We find community where we can whether by search or serendipity — and then cultivate it. Online is a boon to me because I live in a small rural town away from any more populated urban area. The odds of encountering others with PH can be slim. I know of one other but don’t know her. Her sister-in-law is a neighbor. There may well be others I don’t know of.
Another place to look would be in your interest networks because you never know and won’t unless you ask.
PS Does the awareness merch include t-shirts?
- This reply was modified 2 years, 6 months ago by Vanessa Vaile.
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