In July of 2017, I went from Ironman ready to paralyzed

Eventually diagnosed with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), I would spend months in the hospital repeatedly making progress and then relapsing. My body attacks its own nervous system, eating away the nerves coating and damaging the nerves themselves.

Over and over. Again and again.

CIDP is an autoimmune disease with few treatments, and often bleak outcomes

50% of those with CIDP don’t go back to work

41% need assistance to walk or remain in a wheelchair

Years after diagnosis I am in BOTH categories; aggressive daily medications, weekly hospital treatments and old fashioned hard work have been a life saver, but they can’t completely halt my disease. I use braces to run and bike, a crutch to walk without my braces, and the increasing frequency of vestibular migraines, crushing fatigue, and pain have made it impossible to function as a scientist.

But I am making my way through this disease, and am fighting to continue doing what I love, which includes helping others find their own way through challenges by sharing what I’ve learned.

What Have I tried?

The better question might be, what haven’t I tried? CIDP has few FDA approved treatment options: Intravenous immune globulin (IVIg), plasmapheresis, and steroids. I have tried them all. IVIg does nothing for me. Plasmapheresis helps, but I need this 2-4hr hospital procedure every other week, and it leaves me immunodepleted. Steroids also help, but they do so by creating systemic immunosuppression, and have considerable side effects when used long term. In 2020 I traveled to Clinica Ruiz in Mexico to receive intensive chemotherapy and a stem cell transplant (HSCT). Though studies to date suggest 70-80% of patients can remain off treatment without disease progression after HSCT, I relapsed after just a few months. This is reality. There are no guarantees. I’m glad I tried. And I am thrilled to remain active with the non-profit HSCT Warriors on their board and serving as VP of Research to further their mission expanding the reach of information and access to HSCT for patients with autoimmune disease. I have met numerous HSCT warriors whose lives have been changed by this treatment - and that kind of opportunity is one each person with debilitating autoimmune disease deserves.

In the summer of 2021 I traveled to Baltimore and met with Dr. David Cornblath, a Neurologist and CIDP specialist at Johns Hopkins. Dr. Cornblath agreed with my diagnosis of sero-positive, acute-onset CIDP, and believes the monoclonal antibody (MAB) treatment Rituximab offers promise. Though I failed a try with Rituximab in 2019, ongoing research suggests that sero-positive CIDP patients can benefit from Rituximab in a protocol that combines their current treatment regimen with the MAB infusions for at least the first 6 months. 2022 began by getting EVERYTHING with the hope that by mid-summer I’d be weaning off the steroids, plasmapheresis, and subQ Ig infusions (for hypo-gamma globulin). In reality, it took a full 9 months of Rituximab infusions before we could begin weaning off steroids. Even the smallest drop in dosage immediately resulted in increased neuropathy in my face and hands. However, by 2023 my immune system was so depleated from multiple immunodepleting therapies that fuly weaning off steroids was necessary for my overall health. Though initially my facial neuropathy got worse when we decreased steroids, it eventually stabilized even after steroids were removed completely. My initial fear that I was relapsing proved incorrect - one of the many confusing symptoms I constantly wade through with this disease. By fall of 2023 - 6 full years after diagnosis - we settled into a combination of regular plasmapheresis and Rituximab to stave off progression of motor and sensory neuropathy.

An additional debilitating issue throughout my disease has been a combination of chronic headaches and vestibular migraines accompanied by bouts of chronic fatigue. These symptoms began in 2018 and became so intense they were the major driver in the decision to try HSCT at Clinica Ruiz in 2020. Although this chemotherapy treatment did not halt my neuropathy, it did provide a temporary respit from the fatigue, headaches, and vestibular migraines. Unfortunately they returned by 2022 and slowly became more dehabilitating. I had tried numerous conventional migraine medications without relief. However, in the summer of 2023 a migraine neurologist began giving me Botox injections at 20+ sites throughout my face, scalp, neck, and shoulders. Within the first 2 weeks I experienced dramatic relief. My current protocol includes Botox injections ever 3 months, and the oral medication Nurtec for breakthrough migraine relief.

WHAT’S NEXT?

But life doesn’t stand still while you’re trying to find the best combination of treatments and medications! In 2021 I was thrilled to join the ambassador team for the Athletic Brewing Company. The combination of neuromuscular disease and its needed medications and treatments has sadly made enjoying cocktails a rare treat. Athletic Brewing makes fantastic non-alcoholic craft beers, and works hard to give back to, and stay engaged with, the athletic community. In 2022, ABC became the title sponsor for two Ironman races, and I was humbled to have been named to the ambassador team for Ironman Baracelona. That incredible experience was followed by the opportunity to represent Athletic Brewing Company again at the 2023 Ironman Lake Placid. Both were amazing, life changing, agonizing, envigorating experiences that I learned so much from, and will never forget. I Though I have now completed ultra trail races, marathons, the CrossFit Open, and 70.3 mile triathlons with CIDP, I have yet to achieve my goal of completing a full 140.6 mile Ironman triathlon with this disease. That goal remains, and I remain motivated to make it to that finish line.

I am excited to tackle the challenges ahead. CIDP doesn’t have derail life completely. There are changes. There are challenges. But there is no reason to give up. Sometimes you simply have to find a new path.