Wednesday, July 28, 2010

for those with chronic pain issues...

Be on the lookout for this AWFUL law! I am totally afraid of a domino effect. Legislators should not be allowed to decide our pain threshold or punish our doctors if we are in pain! I fear doctors fearing prescribing sufficient pain meds.

If people are interested in starting a letter/email campaign, let me know. I can work on one for you to send to your congresspeople.

Saturday, July 17, 2010

I saw this printed on a shirt...

And I interpreted it as a bird eating a pituitary tumor!  I asked the woman wearing it where she got it (partially because I felt awkward for staring at her chest for so long and I wanted to break the tension) and it's from an online shirt company called  The artist says, 
"I taught a human anatomy lab this semester as a lowly undergraduate TA. The lab coordinators are great educators, and I wanted to thank them for their time with a unique gift.
This design was based on one of their teaching analogies about how the midbrain, pons, medulla oblongota, infundibulum, and pituitary gland resemble a hummingbird feeding from a flower."

It's not available for sale anymore, but you can read more about the artist's basis for the design.  If you're looking for real acromegaly t-shirts, check out Acromegaly Community's online store!

Neck Pain?

Here's another news item that I found through the feed reader:

The article describes a woman who was diagnosed with acromegaly and was experiencing neck, back, and facial pain.  I myself have a lot of neck (and shoulder/head) pain, and it often does indeed feel like my head is too heavy for my neck to support.  Is acromegaly actually making my head heavier?  I often feel like my skull is getting thicker all around.  If people are experiencing growth in their jaw and frontal bossing, this seems possible.

I have gone to physical therapy to learn neck strengthening exercises, and I have found that massage has been very helpful.  I'm willing to try chewing gum and using a soft cervical collar (suggested in the comments) to see if it helps.

Some other similarities that I identified with were a long period stress and misdiagnosis of a "severe illness that had left her doubting her own sanity."

Thursday, July 8, 2010

How to spend billions of dollars on public health and research?

(Note: I know we have readers from all over the world, and even though this post is targeted towards people in the United States, no matter what country you live in, you should still speak up and raise awareness of acromegaly!)

I subscribe to lots of "Action Alerts" for a several different causes, some of them health related.  Today I received an email urging me to contact my Representative and request an increase in research funding for a particular disease:
"Next week, a powerful House of Representatives’ appropriations subcommittee will decide how to spend billions of dollars on public health and research." 
Well, the be honest, everybody already knows what causes the disease that this email was about, but what we don't know is what causes acromegaly.

We should get active and make our voices heard!  We want more research funding for acromegaly!

Find your Representative here:

Then tell your Rep you want more research done on the causes, prevention, treatment, and cure of acromegaly!  Then tell your friends to do the same!  This is our government, let's make it work for us!

Friday, July 2, 2010

News Roundup

Hello Acromegaly Friends!

I hope you are all doing well! This weekend is a long weekend here in the United States, so for those of you who have extra free time this week or next, I hope you are enjoying it!

There have been lots of progress lately in acromegaly treatment!  The following news is from the "Acromegaly News" feed reader in the right-hand sidebar (scroll down a bit, it's the sixth heading down), and in case you haven't been watching, I'll mention the stories that have caught my eye recently.

There are two articles about a new drug called Chiasma, which is the brand name for Octreolin. One interesting thing about Octreolin is that it can be taken orally, which could potentially mean no more injections(!).
Chiasma's Acromegaly drug gets FDA orphan drug status
Chiasma success in oral drug delivery trial
And it seems like Lanreotide (Somatuline Depot), is helping people:

ENDO: Early Data Positive for Lanreotide in Acromegaly
Also there is some news that Lanreotide (Somatuline Depot) and Pegvisiomant (Somavert) work well in combination:
Lanreotide Autogel/Pegvisomant Combo Helps Tough-to-TreatAcromegaly ...
Other news of note - a media outlet has finally corrected the misinformation that was circulating about Tanya Angus:
Giant Woman Tanya Angus Denies Cure
Finally, some accuracy regarding her story!  Tanya's acromegaly has not yet been controlled and she is scheduled for surgery later this month.  Stay tuned to Tanya's blog for updates!