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Acromegaly: Support network for people with this rare disease

For years, Wayne Brown gained a lot of weight, developed an underbite and became so tired he could only work a few days a week. He was referred to specialists, only to be told he was a hypochondriac. Then a tumor was found on his pituitary gland – he had a rare disease called acromegaly. Now he’s written a book and started an online support group. Here’s our Q&A with Brown, author of Alone in My Universe: Struggling with an Orphan Disease in an Unsympathetic World.

Alone in My Universe: Struggling with an Orphan Disease in an Unsympathetic WorldAcromegaly hurts physically and emotionally

SheKnows: Having experienced acromegaly firsthand, can you explain what the disease is?

Wayne Brown: The medical answer is that acromegaly is an overproduction of growth hormone that, left unchecked, can cause severe medical issues including a dramatically shortened lifespan. The patient reality? Acromegaly is a disease that affects the entire person. Sure, there are the physical issues such as severe joint pain, weight issues, sweating and polyps, just to name a few. Acromegaly also does a great deal to a patient’s psychological well-being. Many patients deal with extreme emotions when the disease is not in check.

Symptoms of acromegaly

SK: Could you describe the symptoms and how long you experienced them?

WB: While I was not diagnosed until 2004, the first symptom I remember was in 1994 when I started to notice the pain of a severe underbite. Some mornings I would wake up feeling as if I went three rounds in the ring with Mike Tyson. I was also gaining considerable weight, but that was dismissed by eating habits. My father was dying from brain cancer, so while I was taking care of Dad, I was eating a lot of quick meals and a lot of processed foods from cafeterias and drive-through windows. Other symptoms I suffered, without knowing I had my own tumor growing, included excessive sweating, my hands and feet seemed to be growing, carpal tunnel, the overwhelming feeling of chronic exhaustion. The worst for me, though, were the emotional issues. I felt like I had no control over my temper and what would set me off.

Managing acromegaly

SK: Where are you at now in terms of your health?

WB: I had surgery in May 2005, and the tumor was totally gone for nine months. Currently I am on medication therapy, where I receive an injection once every 28 days. I think right now I am the healthiest I have ever been since symptoms started to develop, but I think that is partly due to medication, and a larger part is consciousness of good health, good choices and passion to help others along their path of diagnosis and treatment.

Support group for people with acromegaly

SK: Why did you start the support group, Acromegaly Community Inc.?

WB: I was simply looking for someone else to talk with who could relate to my aches and pains — truly celebrate my medical victories and empathize with my defeats. In no way was I expecting to build a charitable organization out of it, but I am incredibly proud that we could. We are helping people in a global effort to make sure no one diagnosed today has to suffer from the loneliness and isolation that naturally comes from dealing with the ravages of a rare disease. All we are doing is trying to shrink the circle – bring patients closer to their loved ones, more open communication with their medical professionals, and support from the pharmaceutical community.

Don’t suffer alone

SK: What do you want people to take away from your book?

WB: I think this book is for anyone and everyone. I have talked with people from various backgrounds who have come away stronger from reading the book. Not just acro patients and their loved ones, but also [people with] other rare diseases, several more “mainstream conditions” and even people battling the loneliness of addiction. The message is simple: If you are a patient dealing with a medical issue, no matter how alone you feel, there is someone out there who empathizes with your struggle. Frequently, we as patients are made to feel crazy because no one understands what we are dealing with. You are not crazy. Just keep looking and you will find someone who knows the miles you have walked.

More on acromegaly

Dr. William Ludlam of the Swedish Medical Center explains the symptoms and treatment options of acromegaly.

More on rare diseases

Friedreich’s ataxia: Abryanna’s story
Breast cancer in men
Colin Farrell on his son’s rare diagnosis

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