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!

"Cook" a Pituitary Tumor?

Via Engadget...

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

By Darren Murph  posted Oct 2nd 2010 11:59PM

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.

Physorg

Just a reminder we should always have hope, because new treatments and technologies are being developed every day!

Los Angeles Area - Save the Date!

UPDATE:  DATE HAS BEEN CHANGED TO JANUARY 16, 2011...

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!

Daily Exercise!

Do any of you exercise daily? It's something I've undertaken slowly and carefully. I only exercise maybe 15-30 minutes, but I make sure to do it daily. In my case I think it's really helping to combat side effects of Sandosatin like muscle pain and headaches. And I also have more energy and endurance.

Great new survey opportunity

Acro Friends:

This is fantastic! Another survey to get involved in, but I actually helped in building and crafting this one. The information they are looking to learn is very exciting! These are professional people truly interested in learning about the disease from us. Lets make sure we get a lot of interviews set up.

Market Modelers is looking for individuals who have been diagnosed with acromegaly and are currently undergoing some form of treatment to participate in a 45 minute telephone interview as part of a new research project. There is an honorarium to those willing to participate. If you are interested or you have questions, please send an email to survey@marketmodelers.com and include your contact information (name and phone number). We will contact you to schedule an interview.

Updates on Tanya

The TV documentary about Tanya Angus, "Help! I'm Turning Into a Giant," is being rebroadcast in the next few days.  The next airtimes are Aug 15, 9:00 am and Aug 16, 1:00 pm.  Thanks to Tina for the tip!

In case you haven't heard, Tanya's surgery that was scheduled for this summer was cancelled, despite the support of her local community to provide custom transportation to get her to the hospital.  Tanya and her family are having a tough time with the setback, so your thoughts and prayers are appreciated!  Check out Tanya's website or blog and leave some encouraging messages!

The World's Tallest Man: Still Growing on TLC

Another show on the life of someone living with giantism is coming up Sunday, Ausgust 8 at 10/9c. I received this via e-mail from one of TLC's publicists:

"At over 8 feet tall, Sultan Kosen is the world's tallest man ... and he is still growing! In this all-new TLC special, we follow his extraordinary journey around the world not only in search of a cure to his gigantism but also to overcome his lonely existence.

As young boy in a Turkish village, Sultan dreamed of a simple life - to grow up, have a job and find a wife. At the age of 8, Sultan began to grow uncontrollably and by his teenage years, the extreme growth had forced him into isolation. Continuing to grow, he soon became the 'World's Tallest Man' which brought Sultan fame and opportunities to travel around the world. While confronting his dangerous condition with medical attention, Sultan begins to seek out relationships. More than anything, Sultan longs for a wife and looks for love online, resulting in his first date ever. He also travels to the US to meet America's tallest man, former Harlem Globetrotters George Bell, and is encouraged with the new friendship. Although still growing, Sultan now lives with newfound confidence and bravery despite the continued threat to his life and his dreams."

Here's the preview: