It’s International Rare Disease Day and I Advocate for All Rare Diseases, especially my own. Please make yourself aware that typical symptoms that fall under “everything-under-the-sun” could be something more serious.


What do you see when you look up Acromegaly – a giant. We do not all look the same! If you have these features it’s already late diagnosis. We do develop these facial similarities and hands and feet. The earlier they are caught the better chances of some reduced swelling of tissue. Bone growth is bone growth. My face is much more “the old me” than “the pre-surgery and medication acromegaly me.” My knuckles grew but fingers went down several ring sizes after treatment and several years. My lips are no longer full. My tongue grew enough for me to bite it (usually while sleeping) but not to change my speech. My jaw grew, out and to the right. You can’t see it when you look at me but only 4 teeth touch for chewing food. This has a range of issues besides chewing. unfortunately the mouth is not considered part of the body and requires separate insurance. This is asinine. I hope a rare disease advocate makes some breakthroughs is D.C. This week.

There are so many stages. There is help in the middle but the damage is done. The point of the treatments is to stop it from getting worse. It doesn’t make it better for most. There needs to be help early on to prevent irreversible damage. There needs to be help after treatments because the effects can be unbearable and oddly so different. It is a bizarre disease but anything controlling you hormones is unpredictable.

It’s not all in your head. Oh wait, it is in your head, but it’s actually physically there. Doctors need to start figuring that out in the first year not the fifth or 8th year. And not 10 doctors in.

Get Good at Firing Doctors.

#rarediseaseday #RDWDC2017 #acromegaly