Patient Worthy recently asked the President of the Acromegaly Association Jill Cisco, what it felt like to have acromegaly. Below is her response.
Acromegaly is a disease that affects a person on so many levels that I want to explain it as simply as I can.
When I received my diagnosis, it was a relief. I thought
“now we know why I physically hurt and feel extreme fatigue all the time.”
The overall achiness that I feel when my condition is not medically controlled, I would almost compare to having the pain of the flu. There is also an overwhelming exhaustion. I can literally wake up in the morning tired!
Many might not understand this, but with acromegaly, our bodies work so hard because of the excess growth hormone that it is more than what our systems can handle. Our endocrine system is full of “Goldilocks hormones”, and in order to do well, they all have to be the correct amounts and work well together.
On top of the body aches and exhaustion, we also have harsh headaches to deal with and those alone could be something that knocks out a regular person. These are just a few of the physical pains we deal with daily.
The longterm affects of acromegaly causes changes in appearance that most would not consider to be a positive transformation, in fact many regard it as disfigurement. I try to avoid looking in the mirror now. It’s one thing to look into a mirror and see age, but it is another to look and not recognize the face you see staring back at you. It puts you into a emotional state of withdrawal.
We live in a very visual world and in many cases, first opinions are based on what you look like. I would say this has been one of the biggest lessons I have been taught from having this disease: that outward appearances can be deceiving, what matters most is in the heart.
At our conference, we try to empower the patient to be their best advocate.
We have leading doctors in the acromegaly world that speak. They not only help us understand, but give us the knowledge to fight back a difficult disease. We even have a rare disease counselor that helps us comprehend our role in coping with a difficult situation, in both existing, but living a life of quality.
