Three years ago, Fallbrook resident Leah De La Torre suddenly experienced blurry vision and had trouble breathing, swallowing and talking. After a year of going to doctors to try to figure out what was wrong, she was finally diagnosed with a rare, incurable neuromuscular disease called myasthenia gravis (MG) which is characterized by fluctuating weakness of the voluntary muscle groups.
Once she had a name for her illness, De La Torre thoroughly researched MG and found help through the Myasthenia Gravis Foundation of America. Her determination to educate herself and others about this disease has resulted in her being named the 2017 Walk Hero for the Greater Los Angeles MG Walk, which takes place this Saturday, Nov. 18 in Santa Monica.
Last year, De La Torre was too weak to participate and watched as her husband and a cousin took part in the walk. This year, her husband will push her in her new wheelchair as part of a nine-person team. She said the team includes two other patients, family members and friends.
De La Torre looks normal but her appearance is misleading, so she wants people to know what it is like to have MG. On bad days she has double vision besides slurred speech and trouble breathing, chewing and swallowing. She is unable to stand for long and now uses a wheelchair as well as a shower chair.
She said she used to work as a store manager, standing for 10 to 12 hours a day but, due to her condition, can no longer work. She and her husband, Octavio, who works in Los Angeles, are living with her parents for now while she is working with a lawyer to get disability status with the state.
Through her own experience, De La Torre has found that most doctors and nurses have not seen MG patients before and “it doesn’t look like anything is wrong with them” she said. While they study the disease in medical school, they don’t know how to treat it when a patient has it, especially in emergency rooms.
She said that two months after her initial diagnosis, she ended up in the hospital, her breathing at 40 percent of normal. While she could not open her eyes or talk, she could hear everything that was going on around her. She became more determined after that to educate the people around her about MG.
Many doctors prescribe antibiotics which make the patient’s condition worse, not better, according to De La Torre. The respiratory system can shut down as a consequence, making the wrong treatment dangerous.
She wants doctors to be more aware of the symptoms and treatments. While the disease has been around for a long time and is considered rare, she said more people are developing it. The disease usually begins when people are in their late 30s to about 65 and the disorder is more common in women than men. Her symptoms started when she was 39.
This past September she ended up at the emergency room again when she could not open her jaw or swallow. This time her husband took literature about MG with her to the hospital – and she was given the right treatment.
Stress is the number one trigger, she said, and while patients may have similar symptoms, medications do not work the same way for all of them. She cannot function when the weather is hot, and she has discovered that “the disease gets worse, if you don’t take care of it.” That means changing one’s lifestyle, educating oneself about MG and trying different treatments.
If De La Torre is having a bad or worse day, no matter what, she goes for her treatment which is more aggressive than it used to be as she has the form of MG that includes MuSK antibodies. Besides prednisone, she gets a plasma exchange which cleans her plasma in a process similar to dialysis. The treatment is hard to go through but it seems to be helping so she said “I push for myself to go into remission.”
Another way she and her husband raise money for MG research is through the honey business that she and her father started when she moved to Fallbrook in 2009.
“After getting sick I stopped working with the bees,” said De La Torre. “When my husband and I got married I told him about the business that was no longer. He got really interested and started attending the bees.”
He got the business started again so she has something to do when she feels up for it and can make some spending money. For every jar they sell, $1 goes to the MG Walk. If anyone would like more information about the honey, they can email firstname.lastname@example.org or visit Bee My Honey on Facebook.
De La Torre said she likes the small town feel of Fallbrook and feels blessed to be able to live with her parents until she and her husband can afford their own place. For now, she is taking it “one day at a time.”
Donations to the MG Walk can be made at http://join.mgwalk.org/leahdlt. For more information about MG, visit www.myasthenia.org/.