I was fortunate enough to find a website that unites people who share health concerns.
Makingcontact.org may or may not have your diagnosis in it’s searchable database, but you can submit your health concern(s) to be included.
My son has Aplasia Cutis Congenita (ACC). I was able to find a few people on makingcontact.org whose kids were also diagnosed.
My reasoning is that the more people talk about the health concerns that affect their lives (or their loved ones lives), the more effective treatments (both emotional and scientific) can be realized.
Where to turn also wants to hear your story here.
Thank you in advance for helping others with your story.
