AANEM Foundation News Express

AANEM Foundation News Express

No Slowing Down for Debbie Pentland, Even After Lambert-Eaton Myasthenic Syndrome Diagnosis and Two Other Autoimmune Diseases

7/27/2018
 
At 20, she was diagnosed with her first autoimmune disease – Raynaud’s syndrome. Twelve years later, a second autoimmune disease diagnosis, Systemic Lupus Erythematosis. Then, in 2011, at 52, after collapsing during a marathon, Debbie Pentland learned she had Lambert-Eaton myasthenic syndrome (LEMS), her third autoimmune disease. 
 
“I took up running to combat the bone thinning effect of my lupus steroid,” said Debbie. “After I collapsed during the marathon, I was rushed to the hospital with what we suspected was a massive lupus flare, but was told this did not occur because of lupus, it was another autoimmune disease. I was transferred to a neurological hospital in the next town, and after 10 days, I couldn’t move or swallow and I couldn’t talk without slurring my words. It was then that I was diagnosed with LEMS.” 
 
Debbie recalls that prior to the marathon collapse and the LEMS diagnosis, she experienced the following symptoms: 
  • Weakness in her legs. “I was finding it harder to stand up or pedal my bike. In fact, I fell off a couple times.” 
  • Trouble chewing and swallowing. “So much so, that I was losing weight.” 
  • Blurred and double-vision.
  • Weakness in arms and neck muscles. “I teach Tai Chi and was finding it very difficult to do the moves, especially lifting arms above my head and squatting down and being able to get back up.” 
“Receiving the LEMS diagnosis really came as a big shock,” Debbie recalled. “I was absolutely terrified.” 
 
As explained on the AANEM website, LEMS is not hereditary. It is a syndrome of weakness and fatigue and is often associated with cancer, particularly lung cancer. LEMS is caused by antibodies produced in the body. These antibodies destroy nerve endings that help regulate the amount of a neurotransmitter that is released. When there aren’t enough neurotransmitters released, the muscles do not contract. Approximately 1 in 1,000,000 people have LEMS and 40% of those have cancer; however, in Debbie’s case, there is not a cancer diagnosis.
 
Currently, no cure exists for LEMS. 
 
LEMS treatments include:
  • Eradication of the cancer (if cancer is present).
  • Symptomatic treatments (medications that increase the release or the abundance of the neurotransmitter for the muscles to respond). 
  • Oral immunosuppressants to reduce the production of the antibodies that cause the muscles to stop contracting. 
  • Plasmapheresis and intravenous immunoglobulin therapy.
“Those 6 weeks I spent in the neuro hospital after my LEMS diagnosis were the most frightening weeks of my life. I was told LEMS was extremely rare and that they didn’t know much about it. I was being pushed around in a wheelchair, being fed and ‘watered’ through a nasal gastric tube, and was told I would not be able to work again. I cried so much. I honestly thought my life was over,” she said.
 
Particularly because the doctors told her that exercise would make her LEMS worse. For a person who had been a runner and taught exercise for the past 20 years, that information was devastating.   
 
“It was particularly worrisome for me as I had used exercise for years to control my lupus and Raynaud’s without ANY medication,” she said.   
 
After the LEMS diagnosis, she was initially placed on 9 different drugs. However, as she regained her fitness and with the help of her neurologist, she was weaned off the drugs 1 at a time. She was able to ditch her nasal tube after 2 months, so she could get back to a healthy, nutritious diet once again. 
 
“I’m pleased to say that as of May 2018, I have been medication-free for 4 years,” Debbie noted. 
 
And Debbie has been able to exercise again. In fact, she began training to become a triathlete and her calendar is booked with a whole slew of running events: 4 duathlons, 4 triathlons, a pier-to-pier swim (1.5 miles) and a marathon. 
 
“If I had not been diagnosed with Lupus all those years ago and put on steroids, I would never have taken up running to combat the bone thinning effect,” she said. “I will always run if I can, no matter how slow I get. I love that feeling of freedom both during and after the run. I feel like I am beating my disease … showing it that I am the BOSS and it’s not going to rule my life.”  
 
In 2012/2013, Debbie wrote a book about how she uses running to help cope with her diseases. It’s titled Mutiny in My Body: How Running Has Saved My Life. Debbie is working on updates to the book, but it can currently be purchased on Amazon.  
 
It’s not surprising that Debbie’s favorite quote is: “A journey of 1,000 miles begins with one tiny step.” Debbie spent 6 “scary” weeks in a neurological hospital after her LEMS diagnosis and was “unable to walk as far as one room to another without having to take a rest in between.” After her lengthy hospital stay, Debbie said the first time she ventured outside to take a walk on the seafront where she lives, she saw that quote written on the sea wall. 
 
“I think someone had put it there for the marathon the week before to inspire the runners, but it looked like it had been put there just for me,” Debbie recalled. 
 
Debbie would like people to take a tiny step toward the fight against neuromuscular diseases by making a donation to the AANEM Foundation. 
 
“I am one of the lucky ones. I have managed to pull through LEMS and come out the other side a stronger person. However, most people with LEMS do not fare so well. Some develop cancer which makes matters a lot worse. LEMS is a very rare disease, so it doesn’t seem it has much funding. Additionally, I would love to see money put toward research for autoimmunity and exercise and diet versus medication. It has worked for me.” 
 
Make a Donation
With your help, the AANEM Foundation can fund research that may help improve the lives of patients with neuromuscular diseases, like Debbie. Together we can support researchers that are finding the treatments and cures for tomorrow. Help the next generation of researchers and donate today.
 
 
 


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