Rare diseases bring out similar strengths

Sherri Gardner HowellFarragut, Kitchen Table Talk

One of the best things about having my own small home-based business is the flexibility to do work that I find interesting. I love writing, and most of my clients want a writing component, even if the overall scope is different.


But writing isn’t all I do. For a career journalist, one of my most unusual jobs is doing business management and marketing for a nonprofit called AMENSupport. Staff includes myself and the founder/executive director and an occasional contract worker.

AMENSupport was founded and is run by my friend Linda Hageman of Maryville. The AMEN stands for American Multiple Endocrine Neoplasia, and the organization is a support group for people who have the rare genetic disease of its name.

Linda, a registered nurse, has MEN. When she had to retire because of disease complications, she and her husband, John, founded the nonprofit to try to help others navigate the complicated waters of MEN. She takes no salary for her work, which often adds up to 40-plus hours a week.

Linda and I met through Leadership Blount, and I was a member of her first board of directors. When Blount Today was closed, she asked me to go to work for the nonprofit, but it just didn’t fit my plans at the time.

When the timing and circumstances were right a few years later, I jumped in to help AMENSupport with marketing. Those responsibilities have grown, and now AMENSupport is one of my major clients.

It has been an incredible learning experience. One of the most important things I have learned is that the resilience of the human spirit is unfailing. MEN patients face a myriad of challenges – medical, financial and lifestyle. But they keep on pushing – for attention, for faster tracks to diagnosis, for medical personnel to be better informed about their disease and its complications.

As a “rare disease,” MEN shares the spotlight with approximately 7,000 diseases in the U.S. In this country, a disease is considered “rare” if it affects fewer than 200,000 people. Some are well known, such as cystic fibrosis. Others are even more obscure than MEN.

Even with those numbers, rare diseases affect 25 million to 30 million Americans. Approximately 95 percent of the diseases have no specific treatment. Many, but not all, are genetic, which opens up a whole additional set of challenges and heartaches for parents.

I share all this with you because Feb. 29 is Rare Disease Day. And I share it to ask you to pause and think about the courageous people all around you who deal with life on a different plane.

What is constantly amazing to me as I meet and work with the MEN community and other rare-disease organizations is the advocacy component of having a rare disease. It is born out of necessity. When your doctor has never heard of your illness, you start searching for information. When you often have to travel hundreds of miles to find a doctor who has even one other patient with your disease, you become your own advocate.

And these “own advocates” sometimes open their arms, hearts and pocketbooks and become advocates for others, as the Hagemans have done.

If you meet and get to know a rare-disease advocate, you will be blessed, as I have. Their syndromes have many names, many faces, but that doesn’t matter.

Why not? Because they are not defined by the illness. They work within its confines, but they are courageous, resilient and determined to give time each day to help those walking in similar shoes.

Amazing people, with my friend Linda as one of the most incredible. Check out both the AMENSupport website and the National Organization for Rare Disorders (NORD). Even if just for this one day, be their advocate.

Sherri Gardner Howell, a former features writer and manager at the News Sentinel and publisher at Blount Today, has been writing about family life for newspapers and magazines since 1987.

Leave a Reply

Your email address will not be published. Required fields are marked *