What is it? Patients with this frustrating disease speak out and offer help
In 2000, Stephanie Mungai received one of those pesky insect bites. Most people would just slap on some soothing balm and forget about it. But for Mungai, that was hardly the case. Within an hour her arm was red and puffed up to nearly an inch larger than its normal size. She had to rush to an emergency room.
Mungai soon learned that it was no ordinary insect bite. The doctors informed her that she had an infection in her lymph system, which was aggravated by the bite. “The infection comes from protein buildup in the lymph system and I was treated with antibiotics, sent home and suggested to go see a therapist,” Mungai says.
She did go see that therapist and soon found out that she had lymphedema, an uncomfortable illness that is often a byproduct of cancer treatment. A complicated, confusing and frustrating disease, in short, the visuals on it are that it typically swells extremities—at times, the trunk of the body—sometimes to severe degrees. Inflicted individuals go through much turmoil dealing with it and some of its treatments involve various types of massage, including some self-massage and in-patient treatments. They often have to wear constricting garments to control swelling. In addition, the condition can get worse at any time. And frankly, things never really get “better.” Once someone encounters lymphedema, it seems that it’s there to stay.
Finally, there’s one final lurking concern about lymphedema: You might not have it yet, but you may be in the 35th percentile that have gone through cancer treatments and are likely to get it.
Mungai was diagnosed with breast cancer in 1991 and underwent a lumpectomy. In addition, many of her lymph nodes were removed. And while she became cancer-free, she says that no doctors warned her that she would be susceptible to lymphedema. Hence the shock when she was diagnosed with it after that insect bite. Since then, Mungai has dealt with lymphedema in that same arm.
A similar thing happened to Michelle Shippen.
Shippen ended up having to deal with lymphedema years after she had gone through treatment for uterine cancer. She now deals with the headache and heartache that accompany lymphedema in her left leg.
“It’s a very challenging disease,” Shippen says. “It’s disfiguring and uncomfortable.”
Fortunately, there are support systems and bountiful resources set in place in Santa Cruz for people with lymphedema. Shippen has been involved with a support group through the Dominican Hospital Lymphedema Clinic. And on March 3, she and many others who deal with this disease will host a fundraiser to garner funds to provide things like compression garments for people whose insurance may not cover such items. (The timing comes just days before National Lymphedema Awareness Day, which is March 6.) All monies from the fundraiser will be poured into the Lymphedema Patient Support Fund.
A fashion show will also take place at the fundraiser/champagne luncheon. Models (actual people with lymphedema) will wear clothing options that compliment the body of someone who is dealing with lymphedema.
At press time, there were only a few tickets remaining, so the show is likely already sold out. Organizers, including Shippen, are hoping to raise $10,000.
“There are more people affected than I ever believed,” Mungai says. “[Support groups] are a good sharing mechanism to find out what new things are out there to help you.”For more information about Dominican Hospital’s Lymphedema Clinic, call 457-7113. For more information about lymphedema, visit lymphnet.org. Pictured: Michelle Shippen.