With so many awareness months, do you have time for one whole awareness day?! November 1st, today. A rare, one-day opportunity for a rare disease…ACROMEGALY! Who-hoo!!
Acromegaly is a GH (growth hormone) producing tumor. First, it is on the pituitary-gland which is basically back between your eyes. It is the control center for just about all of your hormones. GH, fun stuff, in excess! If your growth plates have not closed, meaning you are young, it’s gigantism. If your growth plates have closed (anywhere from teens on up) your body keeps trying to grow. This is painful on many levels and doctors are not well versed. Most are misdiagnosed for years —for me it was 5-8 years —so much irreversible damage. I started with headaches. “They” placated me with MRI’s but no one ever did a contrast MRI.
Acromegaly is rare. It is thought that 60 in every one million people worldwide are affected by Acromegaly. Yet, recent studies suggest the numbers could be higher like 115-295 per million. What I want you to know…. if you or someone you know is having odd hormonal issues that doctors can’t pinpoint, if constant headaches are a symptom, if there are facial changes (nose widening, lips plumping, eyes swelling), go see a doctor! If suddenly you realize your hands have grown, are swollen or look abnormal or your shoes suddenly don’t fit, go see a doctor! Don’t take no for an answer. Don’t be afraid to fire a doctor. They are our caretakers but they work for us.
Transsphenoidal surgery (brain surgery through your nose) isn’t fun. Neither are radiating your pituitary, monthly injections, a lifetime of medications and a completely different life that was never on your radar. But who thinks they will end up with a rare disease? What if someone had listened?
We are blessed with several medications. Not all rare diseases have even one. We lack early detection. We lack support from doctors who are under-educated. There is no cure. You cannot un-grow organs and bones or make up for lost time but we can move forward.
Too much information in one day is overwhelming. So, I want you to know the name, Acromegaly. That it is caused by excess growth hormone, which needs to be tested along with igf1 (don’t worry about what it is) and a contrast MRI. Now tell someone you learned something new today and share!
Kara LaFrance is an artist, designer, and Acromegaly patient. You can read more about her on her blog: https://vivelafrancenc.wordpress.com/