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My Acromegaly, My Community
Acromegaly can be difficult to diagnose because it usually takes time for the signs and symptoms to show up and then be recognized. And, in many people with this condition, it is frequently overlooked. This was the case for me.
I found out that I had acromegaly in late 2005, but first went from doctor to doctor for years before receiving my diagnosis. I knew something was wrong with me. I experienced body aches, fatigue, GI problems, swelling, and headaches. I gained weight even though I watched what I ate. Additionally, I noticed some strange changes in my breast, and went to see a surgeon who told me that something rare was likely causing my problem. Eventually, I referred myself to an endocrinologist (a doctor that specializes in hormone disorders) who suspected I had a condition called acromegaly.
While waiting for my test results, I woke up unable to bend my fingers, and I knew that whatever was wrong with me was progressing. My endocrinologist soon confirmed that I had acromegaly, a hormonal disorder that occurs when the pituitary gland produces too much growth hormone. In most instances, acromegaly is caused by a noncancerous tumor on the pituitary gland. He informed me that my condition was serious and needed to be treated right away.
Finding the Right Medical Team
A local neurosurgeon referred me to a group of medical specialists with expertise in the type of surgery I needed. The doctor who performed my surgery had a lot of experience with acromegaly surgeries, and was able to remove most of the tumor on my pituitary gland. But about a month after the surgery, my symptoms started to return. After working with a couple of endocrinologists and finding a medication that worked for me, my symptoms improved.
Finding a Community
About 5 years ago, I had become very active in the Acromegaly Community. I started an online support group for women suffering from acromegaly. My focus was specifically on women because of the challenges we face from acromegaly symptoms (e.g., enlarged hands, feet, facial changes) and the societal pressures of what women are supposed to look like. I often found it difficult for many people to understand what we are feeling. Women also need to manage specific issues, such as reproduction and sexuality.
Today, I am the current President of Acromegaly Community and spend my time helping to raise awareness about the disease in the medical community and the public. It is my mission to help patients empower themselves to get the best possible treatment and to live as full and healthy lives as possible.
I also want to help remove the stigma that goes along with this disease, and I want people who have it to not feel shame. I know many people with acromegaly who are amazing people. We have compassion because we’ve had a lot struggles; we know how precious every day is.
Words of Wisdom
It’s been a little over 10 years since my diagnosis, and I’ve been on medications for 9 years. I never thought that I would feel as good as I do today. When I look at old photos, I am reminded of how far I’ve come.
One of the things I learned during my health journey is: Don’t give up. If something is making you feel ill and your doctors don’t know what it is, keep following up. Keep track of your symptoms and share them with your healthcare team. Ask questions.
Though no one wants to be told that he or she has a serious condition, I can admit that I was grateful to finally learn that something was making me sick. Diagnosis was my first step to getting better!
For many, acromegaly is a lifelong disease. I make it a point to make my health a priority. That means keeping up with doctor appointments, taking my medications as prescribed, and keeping my body as healthy as possible.
On a final note, I often tell fellow patients to try to find the positive in the negative, and to be resilient. I observed many people with acromegaly giving up hope and allowing the disease to break them. No matter what happens, I try to keep a positive attitude. On a bad day, I always say that tomorrow will be better.
If nothing else, I hope that gives people hope.
Jill Sisco runs Acromegaly Community, an organization that helps to educate patients and loved ones regarding the disease.
The views expressed in this article do not necessarily represent the views of Pfizer, Inc.
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