We Need To Do Something Like This!

Let's do what Darius is doing, but for acromegaly.  Who's in!?

(via http://www.youtube.com/nonprofitvideoawards)

What Helps? (Part 3)

Hello Everyone!  I hope all of you are doing well!

I wanted to share a little tip I've found to be useful for managing my acromegaly.  Many of you are probably doing something similar on your own, but in case you aren't already you should consider keeping an accurate calendar of:

• How you're feeling every day (symptoms, appetite, energy level, etc)
• Other things going on in your life (stress, exercise, diet) that may have an effect on your acromegaly
• When you are due to receive your medication/treatment and what dose (I keep track of the date and which side my Sando shot should be on), and if it varies, when you actually get your medication
• When your prescriptions should be refilled and picked up
• All appointments: Doctors, MRI, colonoscopy, tests 
• When you had blood draws, and then update the calendar entry with the lab results

Beause there's simply to much to try and keep in your head!  I have a special calendar specifically labeled HEALTH where I track all of this stuff.  I keep my calendar online through a free service (most email accounts offer this), which even allows me to get notifications and reminders if I want.

Are there any other bits of health info you think should be kept on this calendar?  Do you have your own tip to share?  Please let me know in the comments!

Tune in to TLC Sunday 8/7c

>> HELP! I'M TURNING INTO A GIANT - Sun at 8/7c <<
A heart-breaking look at individuals suffering with Acromegaly, a rare condition that causes the body to grow uncontrollably. These modern-day giants exhibit amazing bravery and determination to lead normal lives.

Tanya (31) -

Wayne's Full TV Segment

Way to represent, Wayne! Fantastic job!

Celebrate Rare Disease Day

This was published in the Buffalo News (my local paper) at: http://www.buffalonews.com/2010/02/28/972097/be-supportive-of-people-living.html

Below is my submitted article. They didn't change much, but I figured I would share both versions.

Honor Rare Disease Day; Someone you know may be

We are all around you, and you frequently don’t know it. We have appointments to see doctors with specialties you cannot pronounce, and have experience going for tests that no one wants to think about. We are the “winners” of life’s lottery in a way that no one would ever want to win. We are patients with a rare disease, and February 28th is our day to “celebrate”.

On the last day of the month, the world recognizes Rare Disease Day in honor of people living with rare, or orphan diseases. Patients with orphan diseases are not necessarily infectious or dangerous, we are merely alone. No ribbons, no support groups, and hardly a celebrity willing to lift a finger. So what qualifies as a rare disease? These are diseases that are considered to be life-threatening, or chronically debilitating. The disease I suffer with is a disease called Acromegaly. While most readers have never heard of this disease, its effects are very real to me and the people who love me. This is a disease without fame, but with dire, even fatal consequences if it goes untreated. The number of people diagnosed with Acromegaly are roughly 3 people per million. Not exactly cancer, so support is limited. Research is hard to fund, patient information is extremely limited, and emotional support for patients is virtually non-existent.

The problem for the medical companies is that research is not profitable when so few people may benefit from a new medication. I understand why this happens, but it doesn’t make treatment any more fun for the patients or their loved ones. Moreover, my insurance company is not thrilled that my medication costs $52,000 a year just for medication, and alternative prescriptions are actually more expensive.

The bigger problem for patients than the medical end is the emotional side of an orphan disease. I wasted a decade of my life telling doctors I did not feel well before I finally found the right doctor who diagnosed me. The reason it took so long is that the symptoms are severe, but cross over several areas of medical expertise. Since diagnosis, I have never met another Buffalonian with the disease, which can be very lonely, and nearly impossible to get advice from people traveling the same path. When I went online looking for information, all I could find out was stuff written for doctors, and the fact that it killed Andre the Giant. Now there is more support. I have actually made a lot of contacts and shared a great deal of information with my virtual friends on facebook and AcromegalyCommunity.com.

Rare diseases can be extremely lonely and scary for family members too. As frustrating as it is to be a patient without support, at least we know what we are dealing with; our friends and family only know what we tell them. Family may be afraid to ask questions of the patient, and they rarely have someone who can sympathize when their family member does not feel well.

If you have a friend or family member who has a disease you have never heard of, be supportive. Just because you have never heard of it does not make the symptoms any less real for them. If someone you care about tells you they have been diagnosed with something rare, please try to learn about it. It shows you care. If they need help, even if it is just a sympathetic ear, be there for them. They probably don’t know anyone else that has the disease to talk with, and your warmth means the world. While we may not always remember to say thank you, we definitely feel it.

Celebrate World Rare Disease Day. Someone you care about probably is.

Send good thoughts to Trys!

Trys is going in for surgery tomorrow!

Best wishes for a successful tumor removal and speedy recovery!

Update 2/9/10: Sounds like the operation went well!   

Sandosatin and Somatuline sales up 17% and 18.8%

Regarding Novartis' Q4 2009 results, PharmaTimes reports, "Turnover of the acromegaly therapy Sandostatin (ocreotide) rose 17% to $316 million." In a separate article, PharmaTimes notes that "Ipsen’s Somatuline (lanreotide) range of drugs for acromegaly and neuroendocrine tumours was up 18.8% to 36.5 million euros."

What is causing the increase in both Sandostatin and Somatuline demand?  I could understand if one went up and the other went down, but both are up!  Either people are increasing their dose, or more and more people are getting prescribed these drugs.  What other explanations could there be?

Is this further evidence to suggest that acromegaly and pituitary tumors are on the rise, as Ms Moge suggests?