Friends, we need your help.
Yesterday, we learned that Kai has been misdiagnosed for 7 years! It’s not RP or Stargardts, it’s autoimmune retinopathy (AIR). If docs had listened & run proper testing his sight may have been saved. 😭 😡 😭
After 3 negative genetic tests, today Kai was officially diagnosed with AIR. 3 different retinal autoantibodies (AAb’s) were found and he’s being tested for a 4th.
Doc recommends one of 2 treatment paths:
1. Ideally, he’d like Kai to receive steroid injections around the eyes 4x a year in combo with immune-modulating therapy (such as Cellcept or Rituximab)
2. If we decide against immuno-therapy then he’d like for Kai to receive injections directly into the eyes on a regular basis.
If no treatment is done Kai will lose the small pockets of peripheral sight he has remaining. Doc highly recommends treatment – fast & aggressively – due to the extensive damage that has already occurred. At this point, Doc’s only attempting to slow progression, but if we are “lucky” Kai could regain some sight. But it’s aggressive therapy with big risks.
We’re floored! I (mom) suggested that autoimmunity may be the cause of his sight loss 7 years ago but was told by two previous university doctors that it was unlikely & not worth pursuing. Thankfully, I didn’t give up & eventually found answers. As a woman who suffers from 3 systemic autoimmune diseases, I feel a combination of relief at finally knowing cause, and regret for not pursuing it faster, and grief that Kai will have to experience autoimmune disease. So many feelings. Kai is about to turn 18 so we have decided to do the necessary consultations & support any decision that he makes.
Here’s what we need from you:
1. Connections to others with AIR.
2. Are there any existing Foundations or advocacy groups specializing in AIR?
3. We’d like to hear from people who have received “lucky” treatments that have restored pockets of sight.
4. Prayer and support (We are wrecked)
Ps. After extensive searching, I have only found 1 Facebook group with only 150 members. We need your help.