ECD Family Gathering

We leave tonight for the Erdheim-Chester Disease Global Alliance Patient and Family Gathering in San Diego (On the West Coast of the United States). This is the only organization actively supporting those suffering from ECD and also one of the only groups supporting research towards finding a cure/treatment for those suffering from ECD.

In the terms of those suffering from ECD I am a baby. I have only been officially diagnosed for 3 months now, but on this trip I will meet people who have been fighting for much longer. I will also be meeting people who have lost their loved ones to ECD. I feel like this is going to be a lot to take in.

What I would like to gain from this trip is a better understanding of the disease, to more accurately understand its probable progression, and to gain more knowledge about potential courses of treatment.  This may or may not happen.

More importantly though I would like to meet other people with ECD. Right now I feel like I am the only one. No one I talk to about ECD really understands my limitations, pain, or frustration. I say Bone thickening and people smile and nod. I say I can’t eat most foods and they give me the pity face. I go from anger to depression for no reason and they suggest counselors. I say histiocytic cell infiltration and they glaze over.

I want answers, but what I could really use now is a few people in my life who understand.