Gracie - a young adult SDS patient in the US, shares her story on how she found her voice though a beautiful article and her transplant journey through a lively vlog. Thank you, Gracie!
Gracie on her "re-birthday" in 2019, when she received her bone marrow transplant.
How I Found my Voice though Rare Disease
Please read the article I wrote for PatientWorthy.com, here: https://patientworthy.com/2020/02/25/how-my-rare-disease-helped-me-find-my-voice.
My advice for new families would be (from the perspective of the patient) to let their child lead as normal of a life as they can. Show them that this disease does not define them and that they can do anything they set their minds to. Instead of keeping their child in the dark and trying to control every decision and every doctor's appointment, educate them on what is going on and how they can care for themselves. Let them make some of the decisions (even if it's just a small one) and let them know that they are and will be entirely capable of caring for themselves. For a sibling dealing with their brother or sister having this SDS, make them aware of the bigger picture. Educate them too on what is going on and why their sibling cannot do certain things. And for parents, make sure the siblings get some attention and love too so they don't resent their sibling with SDS. -- Gracie
My Bone Marrow Transplant
I created a detailed vlog post about why and how I went though a bone marrow transplnat in 2019. Watch it here: https://youtu.be/DM0GmipSKP8