RARE Share: How Have Your View Changed Since Caring for Someone with a Rare Disorder?

December 28, 2013

We took to our Facebook to ask: How has living with or caring for someone with a rare disorder changed your view on those with living with disabilities? Share your “before” and “after” thoughts.

Sarah M: Before: Assumed it was always obvious to tell if someone was disabled. After: You never know who among you is struggling with a disability.

Jessica T:  Caring for my sweet daughter with a rare disease has changed me in ways I couldn’t even explain. Such small victories that people take for granted every day are huge feats for us, it has made me appreciate simple things so much more.

Yonatan M: I’m hating the “invisible immunological disability.” Stop telling me I look just fine when I’m feeling sick as heck, and please stop telling me that my whole immune-system will be instantly repaired and restored if I would just drink more green tea. AHHHHHHHHHHHHHHHHH!!!!!!!!!!!!!!!!!

Alex C: Empathetic and introverted before, but driven to educate after!

Kasey D: Before dealing with my daughter being sick. I looked at kids with disabilities with sadness, I felt bad. I felt that they should never have to go through that. I never knew how their parents felt and how hard it was. After my daughter was DX with a rare disease my outlook completely changed everything. I now sympathize with these parents. I really see everything they go through & how difficult it really is!

Lauren H: After: Lots of people are just like my family in dealing with a rare diagnosis

Kasey D: I never knew how many people actually suffer from a rare disease, until I really looked and read deeper into it after my daughter was diagnosed.

Lauren H: Before: Not that many people are affected by rare disorders.

Mary H:  Before: I didn’t realize some symptoms are episodic. After: Well here we are, with episodes of ataxia! Before: I didn’t know genetic testing could take YEARS! After: Here we are again, two years into it!

Isabella P: I found out how strong I am to take of my baby.

Jodi S: Now I feel much more empathetic and like my heart has been forever changed. I also feel the need to not only advocate for my daughter, but to reach out and help other parents in my shoes  I also get fired up about spreading awareness and understanding of rare disorders.

Kristin: Before I was a nurse just running through the motions. Could offer sympathy and a smile. Now I have empathy which is priceless. Can actually understand what is happening and how devastatingly hard just doing the little things can be.

Ngozi O: Having a child living with a deadly condition called Sickle-cell anemia and mini-stroke is hard and with lack of awareness in the community make things complicated. Sickle-cell anemia and mini-stroke should be the highlight of the Public Health and the Government. Children in schools are labelled as lazy and need support.

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