Ms Moge is owned by Shadow cat pictured in my icon. He bites the tops of my feet when he wants something. A feral cat when he first came to be with us and now rules the house (well he thinks he does)
I unwillingly landed in the position of researcher and supporter for acromegaly patients when my son was diagnosed with a macroadenoma in 1993. Phew seems like yesterday and a lifetime ago all at the same time.
My son went through the traditional treatment options, 2 transsphenodial surgeries, gamma knife and then all the hormone replacements. egads.......... this is a frickin nightmare at times.
My son is a giant now 7', we are preparing to make a video of his life and diagnosis. Absolutely we will share this with Acromegaly Bloggers once we get it done.
To some degree I have evolved my research into giantism born from pituitary tumors.
When he was first diagnosed I remember contacting NORD (National Organization for Rare Diseases) In a week or so I got some literature in the mail. Acromegaly was briefly defined and at that time giantism was not even listed. Leave it to my son to get a disease so rare even NORD didn't have it listed. Looking back the thinking from the medical community was giantism was a disease of the past. Not something you would encounter in modern medicine. A child or teen diagnosed with a p. tumor would be treated thus preventing giantism. Good Plan if it worked. We now know a few stubborn tumors refuse to be treated absolutely.
If I had a nickel for every minute spent waiting in a waiting room I'd be filthy rich.
My son is now 34 and fully supports my going public about his disease and his life. It's time we share what we have learned and also learn from others.
As for me I call myself a giantologist. I have to be a trivia master on the acrogiants throughout the world. The needs of this group of individuals is extreme. I'm working on finding ways to reach out to them and share resources and research. Everything from socks to tops is extreme and hard to find. In some areas of the world, I honestly don't know how they even live. Extraordinary lives led by extraordinary people. I will be blogging on some of these people from time to time.
Well I gotta stop somewhere, I have a problem with blabbing on and on....... I hope my contributions to acromegaly bloggers from time to time helps the acromegaly community in some small way.
Best Regards,
Ms Moge
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3 comments:
Hi Ms Moge!
I was wondering, how tall does one have to be to be considered a giant, and are all giants a result of acromegaly?
Moge,
Glad to have you join the group! I am sure your experience and insight is invaluable to everyone affected by acromegaly. Thanks for the intro, and for letting us know about your son. Look forward to reading more...
Hi Polarchip,
I am so sorry for not responding in a timely manner. Never occurred to me someone would respond. My apologies.
In acromegaly giantism occurs because the tumor/acromegaly occurs before someone has become an adult. This is a good question and I'll write a blog on this to explain it. Not all giants have acromegaly/giantism. A small percentage of who could be considered giant have p. tumors.
Good Question on what height is considered giant. I'll see what I can do to answer it. I've read some debates on this issue will see if there are any official answers.
Hi Alecia,
My apologies to you also, I never thought to look if someone commented on my posts. lol
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