People With Acromegaly Find Hope Through Magic Foundation

At STINSON, we’ve had the privilege of helping to brand and market products that treat rare and serious diseases. For many, the launch of these brands has been life-changing. Here is some news shared by Nancy Burgess, Director of CHEM at our company.

Imagine having problems with your vision. Maybe you’ve also noticed that your:

• Rings don’t fit
• Shoe size went up
• Jaw has grown or your teeth suddenly have spaces between them
• Tongue seems to have grown

Maybe you’ve also developed:

• Skin tags
• Headaches
• Sweating
• Joint pain

This seemingly unrelated constellation of symptoms indicates an excess production of growth hormone, a condition called acromegaly. Acromegaly results from a pituitary tumor, and although the tumor itself is benign, patients typically undergo numerous surgeries and deal with lifelong symptoms. Treatments are aimed at controlling symptoms and growth hormone levels.

What’s worse, many of these people feel alone in their suffering. Most have never met another person with their condition, and it’s hard to get solid information about it. At STINSON, we’ve been privileged to talk to many of these people with acromegaly. We’ve heard their stories and their pain.

Now, there is an opportunity to heal some of that pain.

The Magic Foundation, a patient advocacy group for pituitary disorders is hosting its 5th Annual Convention for Adults with Pituitary Disorders. It takes place on June 11-13 at the Chicago O’Hare Marriott. This year’s meeting includes a session specifically focused on acromegaly.

Those interested in attending can click here to learn more.

If you’ve been suffering alone with acromegaly, you may want to consider attending the June program. Other online peer-to-peer resources include:

Wayne’s website - www.acromegalycommunity.com  
Wayne’s Facebook Group – http://www.facebook.com/acromegaly
Daily Strength – http://www.dailystrength.org/c/Acromegaly/support-group
Hormone Foundation – http://www.hormone.org/Pituitary/
Pituitary Network Association: –  http://www/pituitary.org
Blessed-Beyond Measure – http://blessed-beyondmeasure.blogspot.com/

2/28 is Rare Disease Day — Insights on the Commonalities in Uncommon Diseases

At STINSON, we’ve had the privilege of helping to brand and market products that treat rare and serious diseases. For many, the launch of these brands has been life-changing. Although each individual patient’s story is unique, we’ve noticed some striking similarities across medical conditions.  Here are some thoughts submitted by Nancy Burgess, Director of CHEM at our company.

• Years of suffering without a diagnosis - Many patients with rare conditions suffer for years with seemingly “unrelated” symptoms until an astute specialist finally puts the pieces together. In the meantime, many end up with multiple diagnoses, misdiagnoses, and are sometimes even told that it’s “all in their head.”
• Feelings of isolation - Many of these people feel alone. In part, the unpredictability of symptoms can make it hard to make plans in advance. Additionally, with only 1 in 100,000 people diagnosed with a rare condition, it’s no wonder that patients (and their families) often feel “nobody understands what I’m going through.”
• Self-education - Many patients conduct their own research to get answers. Often patients wind up knowing more about the disease than the average physician, and they are forced to take on the role of educating the healthcare professionals. These patients rely on a small group of medical experts, the Internet, and social networking sites for information, inspiration, and support.
• Patient associations - The combination of suffering, isolation, and the need for information acts as a catalyst for a patient or family member to start a support group. Often, the groups’ costs are defrayed by pharmaceutical companies who share an interest in successfully treating these patients and providing the support they need. The pharmaceutical companies can be instrumental in helping organize individuals and rallying them around their common interest.

Some of these conditions include such obscure diagnoses as hereditary angioedema (HAE), primary immunodeficiency, and acromegaly.

Learn more about HAE at www.haea.org or www.allabouthae.com 
Learn more about primary immunodeficiency at www.jmf.org or www.primaryimmune.org
Learn more about acromegaly at www.magicfoundation.org or www.pituitary.org