APLAID
I’m a patient of the NIH. I don’t believe there is anyone else out there with this disease besides my daughter and myself. Has anyone body be diagnosed with APLAID or any form of it?
Hi
, just checking in to see how you're doing and if you've been able to connect with another APLAID patient(s). -Warmly, Donna (Team Member) , I'm sorry to hear about the MM, and the bad reaction to chemo. Have you talked with your doctor about changing therapies? I'm sending love and light your way Please do keep in touch and let us know how things are going. - Warmly, Donna (Team Member) we have discussed other treatments. Right now after my only treatment my numbers are really good so hopefully I won’t need treatments for awhile.
, wow, I am an avid researcher, and the only information I could find was the information available at the NIH, there was not even any information on APLAID at NORD.
Are they able to provide any treatment for you both? --Warmly, Donna (Team Member)no no yreatment worked. The had tried several things. I am now getting ivig infusions monthly through my hematologist and they have drastically reduced my respiratory infections. , that's wonderful news! I'm glad you have a protocol that is working for you. - Warmly, Donna (Team Member)
Hi
Thank you for posting about the very rare diagnosis of APLAID that you share with your daughter. For others who might also wish to read about this diagnosis, I am attaching a link: https://www.ncbi.nlm.nih.gov/medgen/766875 I hope that someone else here might know of others who are affected. Good luck in your search. Hugs, Gina Miller, Team Member
