Hi. My name is Sheryl, and I have Dupuytren's disease.
You have WHAT?
My reaction exactly.
June 2024
This story begins in early summer. During my annual exam at a local medical clinic, I showed the physician’s assistant a lump in the webbing between my thumb and index finger on my left hand. I’d noticed it for a few weeks and thought maybe it was a bug bite. She felt the lump, then pronounced it to be some sort of cyst that would cost $1,000+ to remove surgically.
I promptly forgot about it.
July 2024
While at my annual dermatology visit, I stuck out my hand and showed the doctor my lump. Likewise, she felt it.
“Oh, that’s Dupuytren’s contracture,” she said.
“That’s WHAT?” I replied.
“Dupuytren’s,” she repeated.
“Could you please write that down for me?”
“Sure.” The doctor tore off a piece of paper and scribbled Dupuytren’s contracture in black ink. I stared at the words, then stuck the paper in my purse.
There it remained until I began to notice the lump more and more. Grudgingly, I pulled out the paper and Googled the name. That’s when I began to learn not only how to say and spell Dupuytren, but how I looked to be headed for a challenging health issue at age 65. On Facebook, I joined several Dupuytren groups.
What is Dupuytren’s disease?
According to Johns Hopkins Medicine, “Dupuytren’s contracture (also called Dupuytren’s disease) is an abnormal thickening of the skin in the palm of your hand at the base of your fingers. This thickened area may develop into a hard lump or thick band. Over time, it can cause one or more fingers to curl (contract), or pull sideways or in toward your palm. The ring and little fingers are most commonly affected. In many cases, it affects both hands. Rarely, feet may also be affected.”
According to what I’ve read, the disease is believed to be hereditary. It may also be linked to smoking, alcoholism, diabetes, nutritional deficiencies or medicines used to treat seizures.
I fit none of those profiles.
September 2024
After asking around, I made an appointment with an orthopedic surgeon in Fredericksburg. At his clinic, a technician took three x-rays of my hand in different positions. Later, the doctor arrived to look at my hand.
“Yep, you’ve got Dupuytren’s,” he pronounced.
In a nutshell, he said the only solution – because there is no cure – was to remove the nodules via surgery. He shook his head at other medical alternatives, such as shots or radiation. Too expensive, he said.
“All we can do is monitor your hand,” he said. “Come back in six months, and we’ll take another look.”
I got back on Facebook and started asking questions in my Dupuytren groups. I also cancelled my follow-up with the orthopedic surgeon.
October 2024
One evening, James, my husband, and I took a bike ride in the neighborhood. Fifteen or so minutes later, I noticed my left hand begin to ache. So I lessened my grip on the handlebar and then completely let go. I must have “awakened the monster,” as Dupuytren patients say, because my nodules began to grow and increase. My hand aches and tingles sometimes. It's not pleasant.
In the meantime, I reached out to Debra, a Texan in one of my Facebook groups, and asked if she could recommend a radiation specialist. From what I’d read, low radiation therapy seemed to be my best option for relief. She said yes and reached out to her oncologist. He got right back to her!
On a Saturday morning, October 12, I emailed Dr. Shalin Shah (pronounced “shaw”) with MD Anderson in Sugarland, Texas, and requested an online consultation. By that evening, he emailed me back!
October 31, 2024, consultation
Via Zoom, Dr. Shah met with me online and shared a slideshow to help explain this disease. He ultimately recommended that I proceed with low radiation therapy on my left hand. Here are some of Dr. Shah’s thoughts and observations during our visit, which I recorded (with his permission):
THANK YOU, DR. SHAH! For more information, Dr. Shah has two videos on his YouTube channel.
I am moving forward to seek radiation treatment from a radiation oncologist at the Mays Cancer Center/MD Anderson Center in San Antonio.