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) just going along as long as my Lamda is low we are not treating g the myeloma. After one treatment we are amazed. Not sure if it’s all related to my disease or not. No I from fromNIH either because they don’t know , ugh, that's so frustrating when there re no answers and you have to live with a kind of uncertainty. Sending love and light in hopes that you get some answers soon, and a path forward you're comfortable with. Please stay in touch and let us know how things are going. - Warmly, Donna (Team Member)
, 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
