What Was the Rare Condition Gilbert Gottfried Battled?
- Comedian Gilbert Gottfried passed away earlier this year at age 67 due to his battle with a rare disease, myotonic dystrophy type 2, which led to ventricular tachycardia, a heart condition.
- Myotonic muscular dystrophy affects a person’s skeletal muscles and digestive muscles, as well as the muscles of the heart. Symptoms include weakness of muscles in the hands and feet, difficulty swallowing, and abnormal heart rhythms.
- Recurrent ventricular tachycardia is a heart rhythm problem that is caused by irregular electrical signals in the lower chambers of the heart (or, ventricles).
Gottfried passed away earlier this year, on April 12, 2022, his publicist Glenn Schwartz confirmed. Schartz shared that Gottfried battled the genetic muscle disorder, type II myotonic dystrophy. His publicist (who was also a longtime friend) said that the actor and comedian had recurrent ventricular tachycardia or, abnormal hearth rhythm as a result of his type II myotonic dystrophy.
Read MoreA Rare Disease Diagnosis
With diseases that are rare, like Gottfried’s type II myotonic dystrophy and subsequent ventricular tachycardia, it can be difficult to pinpoint a diagnosis quickly. Speak with your doctor about the range of tests available if you’re experiencing any unusual symptoms in the body. Related: Overcoming A Debilitating Rare Disease, Ashton Kutcher, 44, Just Ran The NYC Marathon: 'Lucky To Be Alive'According to Johns Hopkins, symptoms of myotonic dystrophy can include weakness of muscles in the hands and feet, difficulty swallowing, and abnormal heart rhythms.
Related: SurvivorNet’s Clinical Trial Finder
Speaking about a different rare condition, cold agglutinin disease (CAD), Dr. Jun Choi, a hematologist and oncologist at NYU Langone's Perlmutter Cancer Center, told SurvivorNet in an earlier interview how rare diseases like this one are approached. "The treatment depends on what's causing the disease," says Dr. Choi.
Speaking specifically of the rare disease CAD, Dr. Choi says of this rare disease’s symptoms, “Sometimes you can have a general unwell feeling, mostly because your oxygen level in your body is low.”
There have been some clinical trials for ventricular tachycardia which look at new treatment options for those, like Gottfried, who have this disease. Various studies (ten of them are found here) about ventricular tachycardia examine different treatment options for this condition.
Understanding Myotonic Dystrophy
Myotonic muscular dystrophy affects a person’s skeletal muscles and digestive muscles, as well as the muscles of the heart.
Symptoms not related to muscle movement may include learning difficulties, sleepiness during the day, infertility, and cataracts. There are two forms of Myotonic muscular dystrophy: Myotonic Dystrophy Type 1 and Myotonic Dystrophy Type 2, which Gottfried battled. Both types are the result of abnormal expansions of genes.
For type 1, the genetic expansion grows bigger with each generation; this leads to earlier onset of the condition, and an increase in severity of the symptoms. Type 1 typically affects children whose families have this rare disease.
Tips for Living with Heart Failure
What is recurrent ventricular tachycardia?
The ultimate cause of Gottfried’s death was recurrent ventricular tachycardia, which was a result of his myotonic dystrophy type 2.
The Mayo Clinic describes recurrent ventricular tachycardia as a heart rhythm problem that is caused by irregular electrical signals in the lower chambers of the heart (or, ventricles). The condition is sometimes called V-tach or VT.
Some episodes can be life-threatening, and treatment for this condition can include medication, cardioversion (or, a shock to the heart), catheter procedures, or surgery to slow the heart rate and reset the rhythm of the heart.
A New Option for Managing Heart Failure
Coping with a Difficult Diagnosis
Gottfried was private about his condition. It can be difficult for many to cope with a challenging diagnosis, whether it’s a rare disease like Gottfried’s or a widely-known condition like cancer.
After a diagnosis, it may take some time to process the emotions around it. You will also want to be thinking about action steps, and your medical team can help you determine the best treatment path, possible clinical trials available, and what the future will look like as you live with your condition.
Regardless, you are not alone in your journey. Your medical team is there to guide you and provide information and answers. Social workers are a great resource to help you sort out the emotions as well as logistics (like financing treatment) around your condition. Skilled psychologists and counselors can be accessed to help you maintain good mental health through your diagnosis.
Don't be afraid to reach out to your support system friends, relatives, etc. for help after your diagnosis. No one expects you to handle everything on your own.
The Value of Using a Social Worker During Treatment
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