I wasn’t diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) until my sons were grown.
Upon his return from serving in the Navy, one of my sons remarked how happy he was that I could make weekend plans with friends instead of “just recovering each weekend after working all week” like I did when he was growing up. For the most part, my sons knew their mom before diagnosis. Later, they saw the positive results of treatments.
Last week, that same son had a medical emergency stemming from two common illnesses: severe tonsillitis and strep throat. His tonsils appeared abscessed on a CT scan. Additional tests showed that the strep infection had taken hold in his bloodstream.
His sore throat had started less than 36 hours earlier.
I found myself watching an IV machine flood my son’s system with antibiotics from across the room. The previous week I was hooked up to a similar machine for intravenous immunoglobulin replacement therapy.
I abruptly found myself on the opposite side of things. I was no longer the patient advocate who knew more about the disease than most of my providers. I was the parent who needed my son’s permission to speak to those working furiously to determine why he was so incredibly sick.
His heart was racing and he was struggling to breathe. He was in the most pain he’d ever experienced. I was suddenly a parent whose child breathlessly said, “Mom, I think I’m going to die.”
I was also a parent who needed to keep my cool with the providers as they did their job. That is easier said than done.
As I’ve connected with parents of children with LEMS, I thought I understood what they face. After all, I have LEMS, and I have young adult children.
I admit here and now, I was 100 percent naive.
I realized it within hours of my son’s health crisis. I cannot imagine the physical and emotional exhaustion that parents go through in the months or years leading up to a child’s diagnosis with a rare disease.
My son was hospitalized for five days as every known pathway was explored. I rarely slept, because with each test I explored every possible complication.
Rare parents, your endurance amazes me. I am astounded that you can balance the overwhelming amount of information while supporting your child and encouraging their independence.
Then there are the medical expenses. My son is a veteran and was treated at a wonderful facility. As we waited for specialists and test results, he would mention how grateful he was that he didn’t have to worry about the costs.
The cost of treating a rare disease is never-ending.
Rare-disease parents, I saw you before. But the experience of the past week has been an eye-opener. Your resiliency tops mine a millionfold. Our five-day emergency pales in comparison to the lives you lead with your children.
My son and I have answers and a plan. I can look ahead to his surgery and be grateful that this will be behind him.
A rare disease is never behind your child. You are the superheroes of parents everywhere.
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 Services, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenia.