Finding Doctors Who Understand Your Disease

Leah Leilani avatar

by Leah Leilani |

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DMD and its course

In life, there are good and bad versions of everything. When it comes to doctors, some get lost in their egos or refrain from showing emotion in patient relations. Unfortunately, I have dealt with many of those types of doctors. Luckily, I now have wonderful physicians who help me to live a healthier, happier life.

It isn’t uncommon for physicians to be unaware of my disease. Mitochondrial myopathy is a rare disease and many people, including doctors, find the concept of low energy perplexing. In these situations, it’s helpful to carry my diagnosis paperwork with me, along with a printed summary of my illness. My doctors who want to learn more about the specifics of Mito have found this helpful. Some doctors, though, aren’t willing to learn. When this happens, it’s OK to end the appointment and not return. You shouldn’t have to convince others that you are in need of help.

My cardiologist exemplifies the concept of a good doctor. It’s common for people with Mito to have heart problems. Following my diagnosis, my heart weakened and the emergency room became a second home. The memory of my first episode with tachycardia remains a scary one. Before that incident, my cardiologist had given my family his personal cellphone number. As I was loaded into the ambulance that night, my mother notified my doctor of my urgent circumstances. He had been on his way to Los Angeles, but upon receiving news of my situation, he made a U-turn and drove all the way back to Children’s Hospital of Orange County.

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Doctors like him make the entire medical process less grueling for patients. When I go in for my appointment, I expect to have an ultrasound and an electrocardiogram. But seeing the big smile on his face when he comes into the examination room makes up for all those tests. If my heart decides to give me trouble, I can trust that he will be there to help me. That’s how it’s supposed to be.

My advice to you is to persist. You deserve the same level of care that everybody else does. The good ones are out there to get you the treatment you need.


Note: Muscular Dystrophy 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 another 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 Muscular Dystrophy News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to muscular dystrophy.


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