August 30, 2017

Bea, NATX Donor Since 2011

Bea was a successful business woman before a dramatic health event changed her life in 1984.  She woke up one morning feeling as if she’d had a stroke- she couldn’t stand up or walk, and her handwriting looked like a first-grader’s. After that she started having countless sinus infections, headaches, and seizures. Bea started experiencing heavy chronic fatigue and joined a support group, where she was able to meet with others sharing similar symptoms and gather lots of valuable information from them while researching for a proper diagnosis.

A few years later, one of Bea’s toes went numb, and always trying to keep a sense of humor about her, laughed at herself for thinking, “I just couldn’t exfoliate deep enough to get all the dead skin off to feel my toe again!”  She visited a neurologist and was then diagnosed with CIDP (Chronic Inflammatory Demyelinating Polyneuropathy), an autoimmune disease.  Her neuropathy symptoms included numbness that spread up her legs and to her hands, and she lost her dexterity and began IVIG treatments, which she continues today with her local neurologist. A few years later Bea was also diagnosed with Neuroborreliosis, a form of Lyme disease.

Bea notices that her CIDP symptoms flare substantially any time she gets a bug or suffers an injury. Studies have shown that about 25% of patients with autoimmune diseases are likely to develop additional autoimmune diseases, so the presence of one should alert CIDP patients to watch for another one.  In addition, Bea tries to maintain a gluten-free diet, which has been shown to help improve her symptoms.  Many patients with autoimmune diseases are recommended to eat a Paleo diet, and Bea explains through her experience that even though she tested negative for Celiac, she has a sensitivity to grain and feels better when she cuts it from her diet.

Through her many health struggles, attending support groups has been invaluable to Bea.  She says, “It’s great to get together and pay attention to problems that most of the world doesn’t know exist. Support groups are so important for people who need a place to call for help. This community helps people feel like they don’t have to keep up with everybody else anymore.  They can slow down and listen to their bodies, and any portion of assault on the body that you can lift off and remove seems to help [including stress and isolation].  If you can come together with people who are similarly afflicted, that helps raise awareness.”  Probably most importantly, Bea always tries to be grateful and keep her sense of humor because it has an enormous impact on her quality of life.  Bea has been a loyal supporter of Neuropathy Alliance of Texas since the organization started in 2011.