City, state recognize Poland woman with rare disease
POLAND — Today marks a victory of perseverance — and a call to continue the quest — for Deborah L. Andio.
Andio, a retired optometric tech-app optician from Poland, was diagnosed with a rare joint-destroying condition known as osteonecrosis, or avascular necrosis.
It took Andio more than four years to make it happen, but Youngstown Mayor Jamael Tito Brown declared today Avascular Necrosis-Osteonecrosis Awareness Day in the city.
The Ohio Senate punctuated that with an official letter honoring Avascular Necrosis-Osteonecrosis Support International — a group that Andio founded.
The declaration was signed by Senate President Larry Obhof and state Sen. Michael A. Rulli, R-Salem.
“I’ve been working so hard to get our own day,” Andio said. She plans to continue the campaign until there’s a national and international awareness day for the diseases.
“Often being diagnosed with a rare condition is not easy,” Andio said. “It can often leave you feeling alienated, exhausted and at times discouraged. We often end up having more questions than answers.”
Osteonecrosis is caused by reduced blood flow to bones in the joints. It can be triggered my a number of things, including injury, trauma, fatty deposits in blood vessels, steroid use, excessive alcohol and certain medical treatments. For about a quarter of the patients, the cause is unknown.
Normally, new bone is always being replaced by new bone. But the lack of blood flow causes bone to break down faster than the body can replenish it. The bone dies. It is most common in the upper legs, upper arms, knees, ankles and shoulders.
“In 2014, I was diagnosed and had no idea what this condition was because I had never heard of it,” Andio said. “A lot of doctors have heard of it, but wait until the joint collapses and replace it. That’s not the best course. I had (heard from) one woman who had 15 joints replaced.”
She started a small support group that has blossomed into an international group. She’s designed a ribbon for avascular necrosis. She developed Facebook, Instagram and Twitter sites, and two blogs, chronicallygratefuldebla.com/blog and avascularnecrosiseducation.com.
“For me, I personally feel that any awareness we’re doing gives hope to others suffering from the same condition because you’re finally recognized.”
Her diagnosis came a few months after she suffered a medial meniscal tear to her right knee while exercising. She was told her bone was dying.
“I felt hopeless but then I started doing research and talking to orthopedic specialists and doctors that specialized in regenerative medicine all over the globe,” she said. “I learned about things like PRP (platelet-rich plasma) injections and stem cell injections that were helping some with this condition. The problem was finding people who could treat me.”
She finally had PRP injections of her own platelets into the affected area to keep it from breaking down as quickly.
“I’ve had three PRP injections over three years. I’m still considered disabled but I can be somewhat functional instead of having pain every day. I used to dread even going to the grocery story because of the pain. … It’s crippling and painful.”
The Youngstown City proclamation states in part, “Whereas Avascular Necrosis-Osteonecrosis Support International currently has a membership of over 1,200 people whose purpose is to educate others and their families on this painful and at time chronic condition, now therefore, I, Jamael Tito Brown, as may of the city of Youngstown, do hereby proclaim Nov. 29, 2019, Avascular Necrosis-Osteonecrosis Awareness Day in the City of Youngstown, Ohio.
The state Senate declaration states in part: “On this special occasion, it is fitting that we pay tribute to Avascular Necrosis-Osteonecrosis Support International for its profound work to support families, promote community involvement, and encourage those with the condition to speak about their experiences. All those associated with this outstanding agency have been diligent in providing meaningful support throughout our state, and we look to the organization’s future with great optimism.”