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Epilepsy Blog Relay: Living with Tuberous Sclerosis

Rachel’s story

My name is Rachel Skaug, formerly Rachel Kaalberg, and I had epileptic seizures as a child. My seizures started at four months old, which was in 1988, and lasted until I was 10 years old.

I am from Madison, Wisconsin. Much of my testing happened at Mayo Clinic in Rochester, Minnesota. I had many tests such as blood tests, EEGs, PET scans and MRIs. I tried many medications and the ketogenic diet (a diet high in fat, low in protein and low in carbohydrates). The diet forces the body to burn fats rather than carbohydrates. It is sometimes used to help control seizures under strict medical supervision.

Medication and dietary changes did not  work for me. Therefore, I had to have surgery — I had five surgeries. Three in 1997 and two in 1998 at a hospital in Rochester, Minnesota.

Freedom from seizure activity

My parents stayed at the Ronald McDonald House in Rochester, Minnesota, during my hospital stays. My younger brother stayed with numerous relatives. The last surgery I had was the miracle that stopped my seizures, and I discontinued medications a year after my surgery. During the last surgery, they removed a 50-cent-sized piece of my right temporal lobe, which stopped my seizures. Today I have been seizure free since June 10, 1998, and still going strong.

After my surgeries, the doctors diagnosed me with Tuberous Sclerosis (a genetic disease that causes benign tumors to form in many different organs — primarily in the brain, eyes, heart, kidney, skin, and lungs). I do have a few issues with comprehension, such as remembering what I read, but I work hard remembering things in picture format to understand what I read.


What is Tuberous Sclerosis?

According to the National Institute of Neurological Disorders and Stroke, Tuberous Sclerosis is a rare, multi-system genetic disease that causes benign tumors to grow in the brain and on other vital organs such as the kidneys, heart, eyes, lungs, and skin. It usually affects the central nervous system and results in a combination of symptoms including seizures, developmental delay, behavioral problems, skin abnormalities, and kidney disease.

The disorder affects as many as 25,000 to 40,000 individuals in the United States and about 1 to 2 million individuals worldwide, with an estimated prevalence of one in 6,000 newborns. Tuberous Sclerosis occurs in all races and ethnic groups, and in both genders.



Looking back at childhood

Now I am a healthy adult with a family and no medical issues for me or my daughters.  Every two years I continue checkups for lesions on my brain and in my kidneys. My experience was tremendous, and all the doctors and nurses that worked with me were great in helping me beat epilepsy. I am thankful and grateful for all the people involved that helped me try anything and everything to overcome my seizures.

Find my book called “Epilepsy Through A Child’s Eyes” on Amazon paperback and kindle.

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