A New Life

After retiring from 25 years of teaching 6th grade, Lauren’s Hope customer, Traci Cunningham, was ready to embark on her second career: a life in archaeology. Just 48 years old, Traci had been doing archaeology work part time for the last ten years of her teaching career. The first ten months of this new adventure were an incredible time spent at The Center for Archaeological Studies at the University of South Alabama. “I [participated in] a field project, outside all day long, digging dirt, pushing wheelbarrows with the college kids,” recalls Traci. “I was so healthy. I hadn’t been to the doctor in about eight years. I didn’t take any prescriptions…I was in pretty good shape, 48, thin, really pretty healthy. And a month later, this hits. Just out of the blue. It started out with a stomach virus that my husband brought home. He got well within a couple of days, and I didn’t.”

What “hit” was the beginning of a life with GBS and CIDP (Guillain-Barre Syndrome and Chronic Inflammatory Demyelinating Polyneuropathy), which Traci explains are, “…rare autoimmune neurological disorders that many in the medical community have never seen. Anyone can get GBS and CIDP. It can begin after food poisoning, viruses, surgery, and vaccines. It happens [when] the body’s immune system goes haywire and attacks the nerves. If treated early, the damage to the nerves will likely not be permanent. But nerve recovery is extremely slow, about a centimeter per month. In a typical GBS case, the damage begins at the feet and works it way up, but not all GBS and CIDP cases are typical, which also makes it difficult to diagnose.”

That single stomach virus caused such severe dehydration that Traci landed in the emergency room and then spent several days in ICU. The dehydration caused her blood sugar to soar over 600 (normal is 70 to 100), which was life threatening. Over the next five weeks, Traci recuperated from her stomach virus but saw a slow worsening of some symptoms she first noticed in the hospital but had initially attributed to the virus: She had indigestion and an odd feeling in her chest, and eating was painful to her mouth and throat. In actuality, these were the first signs of GBS/CIDP.

“GBS starts at the bottom of your feet and works its way up, causing paralysis and damage to your nerves,” explains Traci.  “And, of course, if it gets up to your lungs, then you can’t breathe and you have to be ventilated, so it can kill you. With my case, it was fairly slow. The numbness took maybe four or five weeks to get complete, and that’s more symptomatic of CIPD. The slowness. I was originally diagnosed with GBS, but that progresses to CIPD.”

Traci began seeking answers about the numbness she was feeling, and given the blood sugar issues she had experienced with her dehydration, the doctors presumed diabetes. “They thought this is from your blood sugar and you’re diabetic. So I started [taking insulin and getting treatment]. But the numbness in my legs became more and more apparent, and my diabetes doctor did not agree with everyone else saying this was diabetic neuropathy.” Traci’s specialist explained that while she did have diabetes, she would have to have been living with diabetes for at least 20 years to result in the amount of damage Traci had experienced in just five weeks.

With no answers, Traci spent the next six months seeking a proper diagnosis, but GBS/CIDP is so rare that it took round after round of tests and five different doctors for her to obtain an accurate diagnosis for this disease that is often mistaken for MS. “My legs were numb, and I had mid-back and torso pain and pressure,” says Traci. “During that six months I was given many medications mostly for pain. I was homebound and unable to drive for about a year. I was forced to use a cane and walker. After starting IVIg infusions at six months, I started to improve. [In another] five months, I could walk with no aides, and soon after started to drive again.”

A New Life

After three years of living with diabetes and GBS/CIDP, which is treatable but currently not curable, Traci’s second life after teaching is certainly not what she imagined. Her Lauren’s Hope medical ID bracelet gives her a sense of security and came in handy when she had a seizure six months after her diagnosis. Today, Traci is hopeful about the future and wants to raise awareness so people will know about this disabling disease. “I have chronic mid back and torso pressure and pain that I have to take pain medicine for every day. My legs are numb from the knees down, and I have extreme fatigue. I have been on disability for over two years and am on Medicare. I also have a handicapped tag on my car. I have to be extremely careful with stairs and uneven surfaces. I still fall from time to time. I will likely need IVIg infusions every month for the rest of my life.”

Do you have GBS/CIDP? What would you like people to know about this autoimmune disease?

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