Shefaly and Aminur - "In memory of Saarah."

Shefaly Begum and Aminur Ahmed are family members of Saarah Ahmed who lived with kyphoscoliotic Ehlers-Danlos syndrome (kEDS) and tragically passed away on April 13, 2021, aged 20.
Saarah was a finalist for Miss Universe GB, and an active advocate within her community and globally. Her goal was to raise awareness to healthcare professionals and the communities about hidden disabilities and kyphoscoliotic EDS. She was a beautiful person - caring and wise beyond her years. She had so much wisdom. She wanted to go to university to study neurology. She wanted to help other people.
Her proud mum, Shefaly Begum, and brother, Aminur Ahmed, want to tell Saarah’s story and fulfill her dream of educating people about Ehlers-Danlos syndrome (EDS).
Learn more about kEDS here: www.ehlers-danlos.com/what-is...

[@Yourmom-rw8bs]

I am 16, The doctors speculate that I may have eds or hsd. I am getting genetically tested soon, I wish they had done it from the start… Ive had three alignment surgeries due to the severe dislocations in my knees, I am in pain a lot. Seeing a lot of older people here makes me happy I am not alone, but I wish I heard more from younger people with eds.

[@shannongreenwell1278]

I have EDS and Epilepsy, I either deal with chronic pain or Tonic Clonic seizures. I’m a purple zebra 🦓. Which means I’m a epileptic and a zebra. The people at the hospital here has no clue what EDS is, I had to explain it to the doctor who was taking care of me after I fell at my work place and I had to go to the hospital to get a check up. Which is 1) crazy because being a medical center you’d think they’d know what it is 2) it’s scary because what if someone else has EDS and they have to come to the hospital? They won’t know how to treat them! My prayers are with you and your family, sorry for your loss of your daughter!

[@charityholmes4553]

Thank you for sharing

[@shelleyturner7106]

I'm 57 in 2019 I was diagnosed with EDS I kind of started to realize in my life time why I was soo fragile! I've had so many surgerys in early 40s I had full hip replacement Noone knew why my muscles just deteriated that's just example I've had 8 surgerys on my hands/fingers in last couple yrs. WE NEED HELP DRS NEED TO EDUCATE MORE

[@shelleyturner7106]

I just read your response to my eds post and Wow it was me to a tee thank you for responding

[@gafsabux8389]

Thanks for sharing ♥️ from Gafsa Bux 🇿🇦 ♿ 🦓 🌈

[@flyushkifly]

So sorry for the family's loss - and for the world's loss of such a wholly beautiful person. Thank you for sharing so that we could hear her voice.

[@street_girl]

Rest in peace angel❤

[@omanita7289]

❤🦓