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!

Sunday, October 3, 2010

"Cook" a Pituitary Tumor?

Via Engadget...

Neurosurgeons use MRI-guided lasers to 'cook' brain tumors

In the seemingly perpetual battle to rid this planet of cancer, a team of neurosurgeons from Washington University are using a new MRI-guided high-intensity laser probe to "cook" brain tumors that would otherwise be completely inoperable. According to Dr. Eric C. Leuthardt, this procedure "offers hope to certain patients who had few or no options before," with the laser baking the cancer cells deep within the brain while leaving the good tissue around it unmarred. The best part, however, is that this is already moving beyond the laboratory, with a pair of doctors at Barnes-Jewish Hospital using it successfully on a patient last month. Regrettably, just three hospitals at the moment are equipped with the Monteris AutoLITT device, but if we know anything about anything related to lasers, it'll be everywhere in no time flat.
Just a reminder we should always have hope, because new treatments and technologies are being developed every day!

Friday, October 1, 2010

Los Angeles Area - Save the Date!


The Pituitary Center at Cedars-Sinai Medical Center is holding....

Pituitary Patient Awareness Day 2010

Sunday November 14, 2010
9:00 AM - 3:00 PM

Cedars-Sinai Medical Center
Harvey Morse Auditorium
8700 Beverly Blvd, Los Angeles, CA 90048

RSVP to Allison Pitts at the Pituitary Center, pittsa [AT] cshs [dot] org

Mark your calenders and I hope to see you there!  Leave a comment if you plan to attend!