She was a big boned gal

From Southern Alberta

You just couldn't call her small

K. D. Lang -- "Big Boned Gal"

It is official...I have a diagnosis. I have acromegaly.


What the heck is that, you say? That's what we said, too, when the doctor first started used the term.


Remember Andre the Giant? Robert Wadlow from Ripley's World's Tallest Man? They had acromegaly. This difference is that they developed the disease when they were children, which caused their haywire hormones to tell their bodies to grow without ceasing.


In adults, folks with acromegaly don't get taller, they just get BIGGER. Fat and puffy, bigger hands and feet (here's why you haven't seen in photos of me in quite a while). The copious amounts of steriods I have taken in the last 2 years haven't helped, either, nor has my inability to exercise. Acromegaly also causes enlargement of some facial features, ribcage, other places. And not only is your exterior growing but your organs can continue to enlarge as well, putting great strain on you heart and other organs. There are a myriad other unpleasant symptoms too. In me, it seems to be causing all of the sinus swelling, fatigue and immune system problems that have mystified my ENT and every other doctor I have seen for the last 15 years.


Acromegaly is rare, effecting about 1 in 25,000. It can sometimes be fatal if gone unchecked, and there are some scary things I am more at risk for now. I may have to have pituitary surgery, or may just have to take a very expensive injection every month for the rest of my life. We don't know yet.

Sound pretty terrible, I know, but despite all the frightening aspects of acromegaly I have to admit Tracy and I are so relieved. We were starting to lose hope; we've seen so many specialists and had so many false hopes dashed. To just have a name is a gift in itself, and the thought of a treatment that may alleviate some of my symptoms just sounds too good to be true. Does anyone remember the episode of the Cosby Show when Theo was diagnosed with dyslexia? His whole family celebrated because at last they had an explanation for his poor school performance and it was something he could receive help for. This is precisely how we feel, as odd as that may be. We have hope; something we have been in short supply of lately. And we have a plan, which both of us need.

When I was young my parents had a great book called "Grave Humor". It was filled with true, and hilarious, epitaphs. One of my favorites was "I TOLD you I was sick". We often joked it was the perfect motto for the headstone of a neighborhood hypochondriac. Now, eating my words, I feel like calling several physicians and others who have been both unsupportive and disbelieving and screaming that epitaph into their non-listening ears. Particularly those of us who are women have almost universally experienced being put down and ignored in the doctor's office, and I have sure had more than my share of that. It's nice to have confirmation for what my family and I knew all along...there really IS something wrong.

Another thought that plagues me is how lucky I am to have the resources and education to advocate for myself. The doctor who diagnosed me called me "politely pesky" and stated frankly that was the motivator which kept him on track in helping me. I reminded him that if I weren't "politely pesky" I would have given up years ago when one doctor in particular told me that whatever was wrong with me was in my head. I have had to be my own best advocate, with my very supportive husband by my side. I often wonder about all those people struggling daily with major health concerns because they do not have the ability to constantly push, call, write, and cajole until they receive help. Don't get me on my soapbox about the state of health care in our country...that's a whole other post.

As I type I am waiting to hear about an appointment at UVa with a pituitary specialist; please keep your fingers crossed that we won't have to wait months to get in. The waiting is what kills me...those of you who know me well that patience is not one of my virtues!

If you are interested in hearing more about this crazy disorder this is a great website: http://www.emedicinehealth.com/acromegaly/article_em.htm#Acromegaly Overview.