Support Alys in Her Rare Disease Journey With LEMS

Hi friends of Alys. While talking to Alys about two weeks ago, she shared that she wasn’t sure how she would pay rent next month, which worried me, so I asked her if I could set up a GoFundMe for her. We discussed the pros and cons and concluded that this is her only option in order to stay in her home at this time. If you haven’t heard, Alys has been dealing with some pretty major medical issues for the past couple of years, which has left her unable to work, and she has reached the end of her savings. I have set up this GoFundMe to help her cover rent, basic living expenses, and out-of-pocket medical costs while she continues to focus on her health and trying to get disability benefits, which might take 9-12 months to get approved. I asked her to give me a couple of notes on what she would be willing to share about what she is going through. Below is what she wrote, which would be hard to paraphrase, so leaving it in her words. If you can, please help our friend so she can stay in her in home and focus on her health. She needs this gift of money urgently and will continue to need it throughout the year, which is why the goal is set for what it is.

From Alys: I was recently diagnosed with a rare neuromuscular disease called Lambert Eaton Myasthenic Syndrome (LEMS), which only 400 people in the US have been diagnosed with. Currently, there is no cure for LEMS. It causes severe weakness in every muscle in my body, including my legs and arms, making it difficult to walk and perform basic tasks. It affects my eyes and facial muscles, causing partial paralysis at times. It even affects my diaphragm, which makes it difficult to breathe. It affects my core and neck muscles, making it difficult to sit up or hold my head up for long. It affects my throat muscles and vocal cords, causing difficulty speaking and swallowing. I have had frequent falls, some resulting in injuries. It has significantly impacted the quality of my life and my ability to care for myself. Dysautonomia, or nervous system dysfunction, is another component of LEMS that causes many additional disruptive symptoms. 

The road to my diagnosis was difficult. Although I had been having some mild weakness for about 10 years, it worsened significantly when I got COVID in 2022, which doctors now believe was a trigger event for LEMS. COVID also caused debilitating fatigue and brain fog for many months. I was first diagnosed with Long Covid in early 2023, which turned into ME/CFS as it does with many others. I worked as long as I could through the symptoms, but eventually, I was unable to sustain the long work hours required for my job. My doctor told me that if I continued to work, I could be disabled for the rest of my life. Shortly after, I discovered other reactivated viruses and untreated Lyme Disease, and I have been working hard to treat those symptoms with some success, thankfully.

In May, I was admitted to ICU after having difficulty breathing. Doctors said that I was having my first “myasthenic crisis,” which can be fatal in some cases. Because my disease was so rare, doctors didn’t know how to treat me, so I was discharged with no treatment and a $32,000 hospital bill. Soon after, I found a great neurologist who was able to confirm my LEMS diagnosis and start me on a treatment plan. In addition to the doctors I saw during this hospital stay and the subsequent hospital visits, I have seen over 30 doctors in the past 2.5 years to get an accurate diagnosis. I now have a team of 10 incredible doctors and a physical therapist who help manage my care. I have also found a wonderful community of other LEMS patients who have helped me every step of the way. My neurologist started me on a medication called Firdapse that helps me walk and gives me some better days. This medication costs $860,000 per year! Thankfully, I have decent insurance (for now) and am enrolled in copay assistance programs to help with this portion of my treatment. I am hoping to keep my insurance for as long as possible because finding adequate care for a rare disease is extremely difficult, even with good insurance. 

LEMS is either autoimmune or paraneoplastic, meaning the antibodies are either created by my body to attack a tumor or they are an autoimmune reaction (attacking itself). 60% of patients diagnosed with Lambert Eaton receive a Cancer diagnosis within the first two years. So far, my scans are clear, and it is behaving more like an autoimmune disease, but I have to continue to have frequent PET scans, ultrasounds, CT scans, and other screenings to rule out Cancer over the next two years. Fingers crossed that I continue to stay cancer-free, and it is autoimmune.

I received a treatment in September and October called IVIG. It’s created from tens of thousands of donors’ plasma and purified to create immunoglobulin or immune system antibodies administered by IV over 4-5 days for 8-9 hours each day. The treatment itself was pretty brutal, but I had a rare side effect called Aseptic or Chemical Meningitis from both rounds of treatment. It is a swelling of the meninges, the membranes that cover the spinal cord and the brain. Because the IG stays in your system for several months, unlike viral or bacterial meningitis, there is no quick fix, and it has proven to be an excruciatingly long recovery. Meningitis has truly been the most painful experience of my life. It feels like a 50-pound bowling ball is around my neck, pulling me to the ground. 

I currently have 3-5 doctors and other appointments each week. I spend most days on the phone with insurance companies, doctors, and pharmacies, setting up diagnostic procedures, tests, and treatments. Being sick is the worst full-time job I’ve ever had, and that is saying a lot! 

I have been out of work since June of 2023 and still cannot sit up for longer than 1-2 hours. I did not realize how much I took walking and sitting up for granted! I have applied for disability, but that can take 10-12 months on average to get an initial answer. Anyone who knows me can attest to the fact that I have always been a workaholic and I loved my job. I have always lived an extremely active lifestyle that I am desperate to return to. If only I could just sit up!

My out-of-pocket medical costs have been extremely high, and I have exhausted my savings. It is difficult for me to ask for help, but Roo and I desperately want to stay in our apartment and continue to focus on the treatment I require to get better and get back to work. We would be beyond grateful for any help you can offer.