Caring for a child with a rare disease
This forum is for anyone caring for a child with a rare disease. Introduce yourself, ask a question, or share a story.
My daughter has a rare genetic condition, but not even WGS has pinpointed precisely what she is dealing with beyond EDS. Myself, her, and her brother have overlapping symptoms. If it's not doctors who have no clue what to do with us, it's insurance telling us, well, no, she can't be covered for testing because there isn't enough proof that she has a problem worth testing for. Severe progressive muscle weakness, pandausautonmia, and respiratory failure are just the tip of the iceberg for her. My symptoms are also progressive but not as rapidly as her. One rare disease clinic sent us to the undiagnosed network, but they never got back to us, so here we go again, trying to find more answers. Now it's my turn. sighhhh
I will look into them so far I have a doctor writing a letter to the Undiagnosed Disease Network. Mickey , Awesome, it's wonderful when we can find a provider who is invested in you. Please keep us posted on how things go! - Warmly, Donna (Team Member)
I'm not currently. Any support information would be great. Thank you
Hi, again,
Glad to be of help.I found this EDS specific webpage with a link to online support.
https://www.ehlers-danlos.com/support/This other site lists EDH among its communities. It's a site intended for both patients and their family/caregivers.
https://www.smartpatients.com/communitiesI hope that one or both might be able to provide additional support to you and your dear daughter,
Take good care of yourself too,
Gina (Team Member)
And all of this was precursored by autism
Hi, again,
Autism by itself is a lot to help a child with, let alone to have the additional rare diseases surface that you mentioned in another comment...
Hugs,
Gina (Team Member)
It's heart breaking for me at times to see my 19 yr old living like an 80 year old. Every day brings a new med or symptom or dx. Started with EDS which evolved into severe POTS, then surgery to remove the right ovary with a huge tumor to now iron and albuium infusions, vit d prescription and B12 injections. And now being fitted for a power wheelchair since the power scooter is too hard for her and her ability to walk any distance is diminishing before my eyes
Oh... this is so sad... I can't imagine what it feels like for you as a mom to witness your dear daughter suffering.
Are you in a caregiver support group of any kind?
If not, perhaps I can help search online for one?
God bless you and your dear daughter,
Gina (Team Member)
