Anticipating Changes in LEMS Treatment as My Daughter Turns 18

Columnist Lori Dunham is prepared for when her daughter becomes an adult

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by Lori Dunham |

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Election Day last week in the U.S. brought new excitement to our home. A few weeks before that, we had discussed the issues and candidates in our home state of Florida. We usually don’t follow politics very closely, but we do educate ourselves in order to make informed decisions at the polls.

As we discussed the seats we’d be voting to fill this year, it dawned on our 17-year-old daughter, Grace, that she will be old enough to vote in the next presidential election in 2024. This sparked a new level of interest in the election process for her.

However, this new revelation brought with it anxiety on my part. Grace was focusing on the excitement of turning 18, becoming an adult, and exercising the rights that come with it.

My anxiety doesn’t stem from Grace becoming an adult. She was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) at age 14, so she has a more complicated story than most people her age. I am fully aware of the changes we will face as she becomes an adult, particularly in terms of her healthcare, and specifically, her health insurance.

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Being proactive

I knew this would be an issue we would eventually have to face. What will it look like when our daughter has to change doctors or infusion centers? What will happen when Grace transitions from being treated with Firdapse (amifampridine) as a child to a treatment regimen for adults? How long can she stay on our health insurance?

These are all questions I asked myself long before Grace’s 18th birthday.

Having open dialogue

I began talking to Grace’s doctors when she turned 17 to preempt any problems that might occur. Her pediatric neuromuscular specialist assured me that he can continue treating her until she turns 21. Her rheumatologist agreed to the same thing and said that Grace could continue receiving Rituxan (rituximab) infusions at the children’s hospital until she turns 21.

Gathering information

Information is power, and the more I knew, the less I worried. I called our health insurance company and Catalyst Pharmaceuticals to discuss continuing Grace’s coverage. There will be no surprises regarding continued care. I am fully aware of the paperwork required when Grace turns 18.

According to the information I have gathered, this should be a smooth process without disruption in Grace’s care.

It has been four years since Grace’s LEMS symptoms began to appear. One thing I’ve learned about myself in that time is that I don’t like change. I also don’t like surprises when it comes to our daughter’s healthcare. I would much rather be proactive and know what mountains we face than be surprised and have to play catch-up to make sure that Grace’s care is consistent.

Note: Lambert-Eaton News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lambert-Eaton News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenia syndrome.


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