Two Young Moms Unite Over Chronic Illness and Invite You to Join Their Fight for a Cure

by Rosy George and Jen Roland

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Rosy George and Jen Roland were strangers living hundreds of miles apart. Soon after her life-changing diagnosis, Rosy of New York reached out to the Foundation for Peripheral Neuropathy looking for support. She was given Jen’s contact information, a young mom from Maryland who was also struggling with small fiber neuropathy. Their first phone call was the beginning of a blossoming friendship over motherhood, chronic pain, and desire to serve others facing the disease.

Despite the common misunderstanding, peripheral neuropathy—a disease that affects the nerves outside the brain and spinal cord—doesn’t just affect the elderly and diabetic. Rosy was only forty-five and a mom of two young kids when she began to experience burning, tingling, and numbness all over her body. She was initially dismissed by her rheumatologist, who thought it was anxiety and referred her to a neurologist for further investigation. The diagnosis was a rigorous and exhausting process. After a series of MRIs, EMG’s and extensive blood work that were all normal, she underwent a skin punch biopsy where skin samples were taken from her leg. Her low nerve fiber density led to a diagnosis of a chronic condition called small fiber neuropathy. She was told there is no cure or effective treatment to improve her condition. It was overwhelming to digest this news. Everything she used to do at ease, including running errands, household chores, and caring for her kids, became difficult. Even wearing clothes, socks, and shoes hurt.

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Photo by Imani Bahati on Unsplash

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Jen’s journey with small fiber neuropathy began at the age of thirty-nine when she noticed intermittent burning in her feet. Over a period of three months, the burning became constant and traveled up her legs, making standing even for ten minutes excruciating. She was put on bedrest and had to rely on her spouse and friends to transport her kids, grocery shop, and perform household tasks. For nearly two years, doctors believed Jen’s pain was caused by a previous back injury. She was prescribed various treatments to alleviate the pain, including physical therapy and steroid injections, neither of which was effective. Eventually, Jen saw a spinal surgeon, who explained that back pain would not travel up her legs, and referred her to a neurologist. Jen’s exhaustive blood work and lab tests, including EMGs, all came back normal, but a skin biopsy revealed decreased nerve fiber density. This finding, combined with her symptoms—which now included numbness and tingling in her hands, sweating abnormalities, and fatigue—all fit with small fiber neuropathy. In the time it took to receive a diagnosis, Jen had visited more than twenty specialists and tried multiple medications, eventually finding a combination to dull the burning enough to sleep, resume driving, and perform activities of daily living.

Prior to their diagnoses, Rosy and Jen were healthy, active moms who frequented the gym and enjoyed activities such as running, lifting, and playing sports with their kids. The pain caused by small fiber neuropathy turned their lives upside down, placing severe limitations on what they were physically able to do. They now both rely on low-impact exercise to manage their pain, along with medications. These medications don’t stop the progression of the disease and have unpleasant side effects, but they take the edge off the pain. Both Rosy and Jen attribute their strong faith to maintaining a positive attitude toward suffering and growing in the midst of adversity. 

Since their diagnoses, Rosy and Jen have spent countless hours and thousands of dollars seeking answers. They have come up empty-handed, but there are a few things they have gained: increased compassion for others in pain, connection with others going through similar experiences, and hope. They have a newfound determination to be a voice for the hurting, heighten awareness about this disease, and spur the scientific community to conduct research that will eventually lead to a cure.

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Photo by Priscilla Du Preez on Unsplash

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Small fiber neuropathy is poorly understood by the medical community, difficult to manage, and mentally-draining for those who endure the chronic physical pain. While it typically begins with abnormal sensations of the skin, it can progress to affect autonomic functions such as heart rate, blood pressure, and digestion. The disease is unforgiving and can cause systemic havoc to the patient. 

Today, both Rosy and Jen have been referred to pain management and left to navigate this disease on their own. They are passionate about increasing education and awareness of this disease, which does far more than affect the feet and can not be “fixed” by medication or orthotics. Approximately 80% of the ten million small fiber neuropathy cases in the United States are idiopathic (i.e. the cause is unknown), indicating an urgent need for further funding and research.

Recently, President Joe Biden was diagnosed with mild sensory neuropathy in his feet. Rosy and Jen have high hopes that he will support the peripheral neuropathy community of over thirty million Americans. There is emerging data that small fiber neuropathy has significantly increased since the COVID-19 outbreak. Many people are suffering from neurological damage as a result of  the virus and vaccination injuries. This calls for even greater urgency to take action.

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Photo by Julia Koblitz on Unsplash

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With approximately 10% of the U.S. population affected by peripheral neuropathy, chances are you or someone you know will struggle with this debilitating disease. If we told you a simple action you take today could provide hope to those suffering with neuropathy and greatly improve their quality of their life, would you take it?

There are many ways you can help. We need people who are willing to help us power research and funding for a cure. We also need increased pharmaceutical attention and more effective strategies for disease modifying treatments. With your support we can build a powerful network of multidisciplinary experts who are willing to harness their talents for better understanding and treatment of small fiber neuropathy. If you’d like to help in this area, visit the Contact Us page for the Foundation for Peripheral Neuropathy.

To join Jen and Rosy in their efforts, you can also contribute monetarily by making a donation to the Foundation for Peripheral Neuropathy. Every donation helps advance research toward developing better treatments and a cure. To help us reach our goal, please consider sharing this post.

Rosy and Jen have also graciously volunteered to share their stories for the purpose of raising awareness and education. If you have a press/media or speaking request, or if you would like us to write an article for you, please contact Jen or Rosy at jenroland@gmail.com or rgeorge1976@gmail.com.

Lastly, if you or someone you know has peripheral neuropathy, Jen has compiled a number of resources on her website, which you can access for free here. We also highly encourage you to visit The Foundation for Peripheral Neuropathy’s website for resources, patient stories, support groups, and information about upcoming webinars and events.