Jon's New Article: When Doctors are Wrong

You may remember Jon Danzig from England, who wrote the article, "Acromegaly: My DIY diagnosis."  I remember finding that article online back in 2007 and immediately identifying with the frustration of missed diagnosis, and at the same time I was filled with excitement to see that Jon was working to get the word out about the disease.

I've since emailed with Jon and had the opportunity to get to know him better.  I'm pleased to point out that he has a new article up at the Testosterone Deficiency Centre's website, entitled, "When doctors are wrong."  The title refers to his misdiagnosis as described in his previous article, but it also refers to statements made by a London pituitary surgeon who claimed in a letter to Jon, "for the most part acromegaly is relatively symptom free..."  I'd like to introduce that surgeon to all the acromegaly friends I have met online, and have him tell us to our face that acromegaly is symptom free!  That statement could have cost Jon his insurance coverage, and it has cost Jon his relationship with a pituitary charity that he formerly raised funds for.

It's a very personal and emotional article, and absolutely worth the read.  You should check it out!

Jon, thank you for being so open and honest about your experience with acromegaly, and thanks for raising awareness of the disease so that others may be properly diagnosed earlier!

Where Are the Cures?

My husband attended an event last week where one of the speakers was multiple sclerosis patient and advocate Scott Johnson.  My husband brought Mr. Johnson and his organization, Myelin Repair Foundation, to my attention because they have a new and innovated approach to finding cures for diseases, and we share the same belief that "The system for making new drugs is BROKEN."

From their patient advocacy initiative website, wherearethecures.org:

The Patient’s Manifesto

• I believe that patients are not getting an adequate return on the billions of government, non-profit and industry dollars being spent on the research and development of new patient treatments.

• I believe that academic scientists, government funding and regulatory agencies, non-profit disease research foundations, commercial biotech and pharmaceutical companies, and entrepreneurs should aggressively seek new ways to accelerate the pace of medical research and the development of new patient treatments for the billions living with diseases who can’t afford to wait.

If you agree with the above points, you can show your support by signing the Patient's Manifesto online.  I haven't read through the fine print of what their organization is all about yet, but I was excited to see that there are people challenging the current system and I feel a strong kinship with multiple sclerosis patients because for both diseases, very little is known about what causes them, and we share many of the same experiences that dealing with a chronic disease involves.

It sounds like Mr. Johnson started this organization because he was diagnosed with multiple sclerosis, and the wasn't satisfied with the options available to him.  Thanks for being another inspiration for our community, Mr. Johnson!  The acromegaly community is getting active and taking matters into our own hands, just like you!

Survey Opportunity

I have worked with this company before. They are very reputable, and great to work with. They are not looking for too many people though, so please move quickly! Sorry, US only.

Hall and Partners Healthcare, a U.S. based healthcare research agency has been engaged by a major pharmaceutical manufacturer to conduct a study intended to explore the experiences of acromegaly patients as they navigate through diagnosis, treatment, and life with the disease. Participation in this study will ultimately result in helping to develop new treatments and support programs that meet the needs of physicians and patients such as yourself.

The study consists of a 45" telephone interview to be conducted at your convenience during the end of June. The study is open to all U.S. residents; however we are accepting only 10 participants total across the country, so space is limited.

Please note you will not be asked to prepare for this interview in any way, and the research will be conducted in strict accordance with all pertinent privacy laws and regulations, including complete confidentiality of all study participants.

In appreciation of your time and opinions, you will receive an honorarium of $150 upon successful completion of the study.

For more information on how you may participate in this important research study please contact:

Connie
888-770-8660

If you would like to verify the purpose of this study, please do not hesitate to contact:

David Horn
Research Manager
Hall & Partners Healthcare
646 330 5947
d.horn@hallandpartners.com

"Pasireotide (SOM230) Demonstrates Efficacy and Safety in Patients with Acromegaly"

Every once in a while I get frustrated about the treatment options available for acromegaly, but then I'll hear about new research being performed or new medications being developed and then I will feel a little better about the whole situation.  Doctors, drug companies, and researchers do care about us!  In that context, I thought I'd share news of a new drug being tested called Pasireotide.

There was a paper published about it recently, which caught my attention.  Specifically, the conclusion: 

"Conclusions: Pasireotide is a promising treatment for acromegaly. Larger studies of longer duration evaluating the efficacy and safety of pasireotide in patients with acromegaly are ongoing."

Since finding that paper, I have found several clinical trials of it and some other info about it as well.  It has been shown to reduce pituitary tumor volume and give positive results for Cushings patients, but more testing still needs to be done.

I know this drug won't be for everyone, but I'm sharing this news to remind people that research is always going on for new treatments, so if you are like me and your levels are still not controlled, there is always still hope!

Has anyone here participated in a clinical trial of it?  I'd love to hear about your experience with it! 

Reminder: Meetup This Weekend in Chicago!

Hi Everyone!  If you're in the Midwest this weekend, you should consider attending:

The 5th Annual Convention for Adults with Pituitary Disorders

Including: Adult Growth Hormone Deficiency, Panhypopituitarism, Cushings and Acromegaly!

June 11-13, 2010
Chicago O’Hare Marriott Chicago, Illinois

Wayne will be there, hope you can be too!

http://acromegalybloggers.blogspot.com/2010/05/upcoming-events.html

Speakers Bureau

I am starting to build the page for the website for the Acromegaly Community Speakers Bureau. This is for patients and their families. If you are interested, please email me a head shot, bio (appx 2 paragraph), and the focus of what your speech(es) would be on. Please remember, we will need to chat by phone so I can hear you deliver it first! :) No geographic limits!!!

wayne@acromegalycommunity.com

Wayne's latest article!

"Man with hormonal condition gets strength through Internet links"