The LEMS community taught me how to advocate for my child
Advocacy is an important skill in the rare disease world
I have lived in many countries and cultures, thanks to my husband’s service in the U.S. military. One of the first things we did upon arriving in a new place was learn how to assimilate. The military gave us opportunities and tools to learn the local language and pointed out the do’s and don’ts of a particular culture.
Our family entered the rare disease world more than three years ago, after our daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) at age 14. Suddenly, I was thrust into a culture I knew nothing about. I didn’t have the knowledge or skills required to thrive in this community. I was in culture shock and needed time to assimilate.
Fortunately, the LEMS community helped educate me. Other patients and caregivers taught me not only how to live within this subculture, but also how to thrive while helping my daughter fight her health battles.
They explained what intravenous immunoglobulin replacement therapy does and described some common side effects of Mestinon (pyridostigmine). They shared their experiences with various neurologists. They taught me what “half-life” means in reference to drugs like Firdapse and Ruzurgi (amifampridine). These people gave me the knowledge I needed to navigate this new world successfully.
Learning how to advocate for my child with LEMS
One thing I heard regularly was that I needed to be an advocate for my daughter. I’d never given much thought to advocacy, and I associated it with a school setting. But in actuality, it meant ensuring Grace received proper medical attention and treatment from the right doctor.
A recent incident reminded us of the importance of advocating for Grace, and Grace learning to advocate for herself.
Grace has been attending physical therapy consistently since her diagnosis. Her original therapist worked diligently with us to learn about LEMS and how Grace responded to various physical activities. She tailored exercises and their intensity to Grace’s health, understanding that if she pushed Grace too hard, it would take days for her to recover.
Sadly, physical therapists move on to new jobs. Grace recently had her first appointment with her seventh physical therapist.
Now that my daughter is 18, I don’t usually go in with her to the therapy appointments. I just get a brief overview from the therapist when I pick Grace up.
After the latest appointment, I could immediately tell that Grace was overworked. Her legs were weak and she looked overheated. I was proud that she spoke up about it when the three of us were chatting. She let me know in front of her therapist that she felt like she couldn’t do more.
This provided me with a great opportunity to educate the therapist about LEMS and how people with the condition typically respond to exercise. I gently challenged her to look into best practices and encouraged her to read case notes from Grace’s previous therapists. We are hopeful that this therapist will embrace learning about the disease.
I am so glad this community pushed me to advocate for my daughter, which, in turn, helped me teach Grace how to advocate for herself. Without them, I wouldn’t have learned how to navigate life with a rare disease.
It’s important to share what we know, encourage others on their journey, and remember we are stronger together!
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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