Thanks to the Rare Disease Community, I Feel Less Isolated

Karen Del Vecchio avatar

by Karen Del Vecchio |

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As I sit here working on my column, with a heating pad wrapped around my hip to calm down a recent injury, I wonder about the similarities among those of us with various rare disorders.

Of course, someone like me with Ehlers-Danlos syndrome (EDS) faces different struggles than someone with pulmonary hypertension or sickle cell disease, for example, but what about the threads that tie different rare disorders together? Are they perhaps more important than those that set us apart?

Personally, I have never met face-to-face with anyone else who has EDS. I’ve heard a couple people say they know someone who has it, but I’ve never actually met them. It’s really made me think about how I sometimes just hang out in my personal EDS silo. But is that really the best approach?

While every disease comes with its own unique struggles, I think that one thing many of us deal with is that if you have a rare disease, it’s, well, rare. You may or may not know others who have it and manage the same things you do. And there are moments when that can be frustrating.

But then I think about all of the people I know who have other diagnoses. I have a friend with rheumatoid arthritis. I know someone with alopecia. A family member has Crohn’s disease. The list goes on.

So, really, I have an entire network of people who manage rare diseases and disorders all around me. While their individual symptoms and struggles are different, we all likely manage some of the same things every day, including fatigue, having to explain our condition to others, trying our best to break through our symptoms and be as “normal” as possible, and trying to manage pain or discomfort as best we can.

Some of these more universal phenomena have made me realize that while I don’t actually know anyone else with EDS, I know plenty of people who do understand what it’s like to manage a condition that most people don’t understand. In doing so, I’ve come to recognize that the greater rare disease community is actually much larger than I ever realized. 

When I started to think of all the people I know who work hard every day to manage a condition, it really helped me feel like I’m less of an anomaly and more like a lot of other people out there. Having a rare disease can feel isolating, but recognizing the size and strength of a larger community was eye-opening for me. 


Note: Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ehlers-Danlos News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.


Hilda Gail Wright avatar

Hilda Gail Wright

Hi I have elhers danloas type 4 ,it's vascular. I am a small frame 5 ft lady, now 55 and still struggling with pain in muscles and joints. Have had numerous surgies ,my 2 shoulder replacement, plates and screws in C 5 & 6 of my neck, bone marrow to replace degerative disk. Lots of my immediate family has passed away, tested my son years ago and he has it too. So I know what you are going through hgw

Annie Konkol avatar

Annie Konkol

Hi -- There are many EDS survivors out here. I'm new to the club for about 2 years. We should connect. Is there a Zoom group for such?

Karen Del Vecchio avatar

Karen Del Vecchio

Hi, Annie! Thanks for taking the time to comment. I haven't joined in them myself so I don't have first-hand experience, but I do know that the Ehlers-Danlos Society offers an array of virtual support groups and communities!

Edward A S avatar

Edward A S

I appreciate the article I just started dating a lady that has vascular eds so I'm trying to read and learn everything that I can on the subject. Thank you for your article once again

Karen Del Vecchio avatar

Karen Del Vecchio

Thanks for taking the time to comment! I'm glad you found it helpful :-)

Gail Tiede avatar

Gail Tiede

Hi, I just loved your article! It's so true. We're here to love and help eachother. Community is everything. I was diagnosed after 20 years of doctor hopping. But I'm progressively getting worse and still haven't found a doctor. I have a neurologist but not sure if he knows what he's doing. I'm on my 13th med in 3 years.

Karen Del Vecchio avatar

Karen Del Vecchio

Thanks, Gail! I'm glad you enjoyed it!

Gioanna Edwards avatar

Gioanna Edwards

Ehlers danlos it's something I still trying to come to Peace and understanding how this cruel and disabling disease can be so well unknown by a so many specialist and GP's in Adelaide South Australia we deal with chronic fatigue muscle
And learning about me and my joints that fail me and each day it's a surprise not a happy one it's a will I walk today will I have muscle fatigue I feel certain countries wet very unknown which rally and avocado with the ministers health ministers and get our voices heard


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