What are some of the biggest accessibility challenges you face in your daily life due to your rare disease?
Accessibility is a crucial part of living with a rare disease, and your experiences can be varied yet also relatable.
Consider sharing your thoughts or experiences about accessibility in the context of physical spaces, healthcare access, communication and understanding, work or education, or social and community inclusion.
I have Fibromyalgia. Now I'm having allergies to Fragrance mix 1 and textile dyes. I can find hair products to be fragrance and dye free but now I'm going to have to give up all my black clothes and use only natural fabrics. My closet is full of the wrong clothes. I need light cotton without spandex. The stores are full of dark colors.
, well, nuts! I can see how that would be very challenging (and possibly expensive)! As someone who loves wearing black, I feel for you. I do hope the switch to natural clothes helps with your allergies and that you can find comfortable, affordable pieces.
Again, I am sorry. And, it's okay if this unplanned wardrobe change makes you feel sad or angry or annoyed or any other emotion. You get to feel how you feel about this.
Best, Erin, Team member.yes just because its white doesn't mean its not been treated in chem or bug spray @
Fatigue is the hardest for me.
, I hear you! Fatigue related to a rare disease can be so much more than just "feeling a little tired". I can be pretty all encompassing and debilitating.
Best, Erin, Team Member.
No energy. 24/7 back pain.
Rheumatoid arthritis in my right hand and now Neuropathy in both feet..... now dental problems are increasing..... hoping your days are better then mine.My worst days are so frustrating. I have MG, heat normally causes me issues. I find that I can’t function normally. I’m exhausted even after the easiest task. The sudden lack of energy, the heavy feeling in my legs makes it hard to walk.
, I hear you. It's hard when your tough days are just so, so tough. Are the people in your life understanding when you have these rough days? I sure hope so. And I hope you have many more good days than bad ones!
Best, Erin, Team Member.
