Your experiences with Rare Disease
Feb 28 is Rare Disease Day!
People with rare diseases often encounter some extra difficultities that those with common conditions are less likely to experience. Knowledge about the disease can really lack.
What are your experiences with a rare disease?
Did you have difficulties getting a diagnosis?
Have you had trouble with being believed?
After getting a diagnosis, do you find doctors know what to do when you see them?
Here are some experiences that others have shared related to diagnoses and not being believed.
I have experienced a rare disease involving my boyfriend. He has a genetic disorder called Loeys-Dietz and it is similar to Marfan's Syndrome. It is a connective tissue disease and causes many complications, especially cardiac issues. He has had 3 open-heart surgeries and 4 back surgeries. He also has an artificial aortic root valve. He has 2 titanium rods in his back to prevent extreme scoliosis in which his back turns into a zig zag and his organs get squished together. His tissues are very fragile and can have bleeding issues. He has had surgery on his eyes to fix dual detached retinas. He is allergic to so many medications, especially antibiotics. There is only one antibiotic he can take. He is on blood thinners and a few other medications. With everything that he has been through he still smiles and is always upbeat and positive. I wouldn't want to spend my life with anyone else. I love him so much!
@blueClementine942 Sounds like he does well with all of that and the 2 of you have a great relationship. Thanks for sharing!
