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| [Karen, Ellen, Tanya, Jenny] |
Ellen (way to go again Ellen!) helped organize our meeting with Tanya Angus, and her mother Karen in SF. It was great to meet them, and welcome them to our California Acromegaly family :) They were very gracious, even about meeting us right after their arrival in SF. They're amazing people, and I'm really grateful that they're both putting their lives in the spotlight to bring more attention to Acromegaly.
My own personal choice was to expose my life with Acromegaly online, and that's a much easier avenue to take. I still have fears and other issues with bringing the subject up, even among people I consider close friends. I have a fear of public speaking that I've never overcome, so having people like Tanya who can be a spokesperson for herself, and everyone else with Acromegaly, is very appreciated.
I really hope Tanya finds a cure with her unique case (unresponsive to treatment as she keeps growing - at 6'11" now), or at least more effective treatment. Acromegaly is such a horrible disease, and it saddens and angers me that her case wasn't caught quicker. There's not only the physical aspects of the condition to deal with, but the mental aspect that contributes to our delayed diagnosis. Personally, when I started gaining weight and my hands/feet became larger, I became depressed, and figured I had just "let myself go." It's almost like I was in denial without realizing it. I thought I was a freak, or just weird with certain symptoms - like my continuing lactation years after having my last child - that I even feared telling my doctor my symptoms! And along with depression I had feelings of being disassociated from myself, and to a certain extent I still do now, as though I don't know myself or my feelings anymore. I believe these feelings are due to Acromegaly, as well the depression.
The symptoms of Acromegaly can be so insidious, that we fool ourselves into thinking there isn't anything wrong. Thanks so much to all who have come forward to share their stories.
Follow Tanya's story:
Tanya Angus - Official Site
ABC 13 News - Woman with gigantism is back from San Francisco with new doctor's orders
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4 comments:
Hi there,
My name is Rochelle. I don't know if I have contacted you in the past or not. I have a terrible memory these days :-(
I am a fellow Acromegliac and thought I would just drop by and say hi, "HI"
Feel free to contact me anytime you might like to chat or share stories.
Hope to hear from you.
Regards
Rochelle
www.rochellebuckley.blogspot.com
Hi Rochelle, yes we have chatted before. I'm not online as often anymore though. I'll stop by your blog :-)
Just found your blog! So impressed and I know the feeling of having a pituitary disorder too. That's another long story but stay strong and I always feel that there simply needs more research in these areas, so many people suffer. Take care.
Thanks for sharing about the meeting of organizations. My cousin planned her office Christmas party at one of the big meeting space San Francisco last year. Chocó cake and cookies were delicious and gave beautiful paintings as gifts to all guests. Overall it was really an enjoyable event.
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