Thursday, October 28, 2010

Acromegaly Gals!

L to R: Karen, Ellen, Tanya and Jenny
About 2 weeks ago, Jenny and I drove to San Francisco together to meet some very special people-  Tanya Angus and her mother Karen!  They were in town for a new endocrinologist appointment at UCSF, and they were so kind to let us spend some time with them even though they had a super long day driving from Las Vegas to San Francisco with the AMR/MedicWest ambulance team.  Some of the ambulance drivers stopped by while we were visiting and I was really happy that I was able to thank them in person for the incredible service they have performed for Tanya (that's an "HONORARY PARAMEDIC" t-shirt she's wearing!), Karen, and indirectly, the whole acromegaly community.

I also had a chance to thank Tanya and Karen in person for their work in raising awareness of acromegaly.  Sharing such personal struggles publicly can be tough, but they are willing to do it because they know that people need to get the word out about the disease. I also thanked them for being great role models because even though they are dealing with so much, they still remain incredibly sweet, kind, welcoming, and wonderful people!

Karen is amazing because she knows SO MUCH about everything related to acromegaly - symptoms, medications, new technologies and new developments.  She's totally on top of everything!  She knows how to talk to doctors in order make things happen and she never stops looking for solutions - I wish that everyone with acromegaly could have their own personal advocate like Karen!

Tanya, Jenny, and I chatted for a while about our lives, which was pretty remarkable because how often do THREE women with acromegaly, all in their thirties, get to hang out?  We shared a lot of personal experiences, such as how our bodies have changed and how acromegaly has affected our lives, and our thoughts wondering what might have caused our tumor to grow.

Most of all, it was nice to just hang out and be supportive of each other.

Many thanks to Tina for helping me get in touch with Tanya and Karen, and I hope that she can join us for the next visit!  More info about Tanya and Karen's trip is available on their local news website, where there's a great videos of Tanya smiling - I love seeing her so happy!


Amy said...

I have an acromegaly blog and would like to be linked to this website. How do I do that?

polarchip said...

Hi Amy!

Welcome to the community! I have added your to the sidebar on the right (alphabetical by first name). Looking forward to lots of updates!

I was glad to read that your recovery from the tumor resection is going well! I hope things will get better and better as your body heals.

-Ellen (polarchip)

Starbucks Addict said...

Thanks for helping arrange the meeting again Ellen. It was great to meet Tanya and her mom. They're both amazing, beautiful people and I wish them luck, and many thanks for putting their lives in the spotlight. Our Acromegalic support network family is awesome, and totally unexpected for me. I can still remember the first shocking, life-altering moments of my diagnosis 4 1/2 years ago. I think I'd still be lost, insanely worried, and so sad without all the support I've found online. Thanks again to everyone!

Alecia E. said...

So nice to see this post! I watched the recent news report on her blog and suspected it might be you two that went to visit Tanya while she was in California. What a wonderful show of support, Jenny and Ellen!!

Welcome to the group, Amy!