SAN ANTONIO – A San Antonio woman passionate about teaching special education with the North East Independent School District had to retire early after being diagnosed with a chronic disease.
Now, she has made it her mission to educate others and spread awareness.
Julie Bell said she has been living with CIDP or Chronic Inflammatory Demyelinating Polyneuropathy for 30 years.
“It started off with an awkward gait, but I wasn’t sure what was going on,” she said. “I just figured it was a post-pregnancy walk or something because I just had my son.”
She said her parents, both in the medical field, also noticed and told her to see a doctor.
“I went to the orthopedic doctor, but then I soon got a phone call saying that I needed to see a neurologist,” she said. “By January 1996, the doctor told me that out of all of the chronic diseases I could have had, I was lucky to have the one that was treatable.”
CIDP is a long-term neurological disorder that affects the nerves in the arms and legs. It’s an autoimmune disease where the body’s immune system attacks the myelin, the protective covering around nerve fibers. This damage to the myelin causes a variety of symptoms, including weakness, numbness, and tingling.
“Basically, (the) body produces bad proteins, the nerve kicks in to attack those proteins and eats away the myelin sheath on the nerves,” Bell said. “So it is like having an electrical phone cord. If it is frayed at the end, sometimes it makes a connection, but sometimes it doesn’t. My brain is fully functional, but there is a disconnect of the nerves along the way.
Bell has had to adapt her lifestyle because of the disease.
“I have to wear ankle-foot orthotics because I have drop-foot, and sometimes, I can fall over still because of that,” she said. “I’m losing motor functions in my hands, so I have to use large pens and pencils. Zippers are also an issue, so I wear elastic or pull-over clothes.”
Every two weeks, Bell also has to do IVIG infusions at home that could last 4-5 hours.
“It is from human plasma donors,” she said. “So anytime someone goes to a plasma station to donate, from the moment it is donated, it takes one year before it is ready to be processed and used for a human. Each bottle comes from about 150 donors, so when you factor that in, I get like 80 grams of IVIG every two weeks for about 23 or 24 years, which means that is a lot of time infusing and a lot of donors.”
Bell stays busy, not only with her grandchildren, but she is also the South Central Regional Director for GBS CIDP Foundation International.
“I am in charge of the liaisons in Texas, Arkansas, Louisiana and Mississippi, and I am the one in the San Antonio area and the South,” Bell said. “We get a referral of a patient and they will send out an email that someone was diagnosed and would like to be contacted in one way or the other. Then, I would contact that person and tell them my journey and answer any questions they may have in this chapter of their lives. We also will meet, and I will help them along this journey in this diagnosis.”
Bell also attends the GBS CIDP Foundation International Symposium every two years.
“Not only do you meet so many people who are just like you, but I gather any gadgets and gizmos and clothing and bring it back for patients that they may not be aware of,” she said. “Like tools to help with zippers and stuff like that”
Another way Bell has used her story to help other families is through a children’s book she wrote with her 4-year-old daughter at the time of her diagnosis.
“My son was just seven months, and (my) daughter was four,” she said. “So my son has known a mom without a disability, and my daughter barely knows what that life looks like. So we wrote a book called, ‘Bree’s Just Like Me.’ Thankfully, my daughter was so talented so the pictures in the book were illustrated by her. It is about a tiny turtle with families in mind, and it is for children who have CIDP or children with parents who have CIDP, so that they could share their journey and the children can understand what is going on.”
The book can be found through the foundation, and there are two other versions for GBS and MMN.
Education and resources are not the only things Bell and the foundation work towards.
“We are all about research,” she said. “We just had a group go on the hill to promote House Bill 1143. It would allow individuals such as myself who are on Medicare to infuse at home rather than go to a hospital or an infusion suite to get their medications. It is nicer to infuse at home, where you can have your animals, blankets and watch your own TV without having to worry about the coughs or illnesses other people and their families may have during infusion.”
Other Texas statistics to know, according to the foundation:
2,731 People are living with ongoing symptoms of CIDP
546 People are living with GBS
182 People are living with MMN
Even though not much is known about these diseases and even though they are not curable, Bell urges families impacted to never give up.
“I’ve had very blunt conversations with my doctor, and the reality is that I will most likely end up in a wheelchair at some point and time,” she said. “Ideally, it would be great if we could just find a medication that could just zap this away, but the reality is that it is a chronic disease, so it will continue to progress.”
First of all, I would say you are not alone. Don’t give up. Keep trying and do the best you can. Being active with my grandchildren and doing this has kept me going. If I sit and do nothing and let the disease take over, it will get worse faster. But if you get up and stay positive. You can have your woe is me moments, but you need to stay positive, one step at a time.”
If you or anyone you know is experiencing symptoms of CIDP, GBS or MMN, or if you would like to see more information about how you can donate, visit the GBS CIDP Foundation International website.
You can also reach Bell directly at (210)885-0054 or [email protected]
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