Being part of a family that has endured the devastation of ALD since 1959 when my mother’s brother lost his battle and then losing both my older brother in 1972 and my younger brother in 1979. Knowing since 1987 when I was 18 years old that I am a carrier set the stage for more painful ALD experiences. My grandmother died in 1992 from her ALD symptoms and my mother died in 2010 from hers. My mother was paralyzed from the waist down with she died. The pain she suffered for the 10 years leading up to her death was excruciating.

My husband and I chose to terminate our first pregnancy in 1997. A boy already affected with ALD in utero caused us to soul search as to how we could have healthy children. I did extensive research and found a reproductive endocrinologist at NYU that specializes in IVF with PGD. It was 1998 and the testing for ALD in embryos was not yet developed. Our option was to chose female embryos.  We did three cycle of IVF – the third being a success. 

I gave birth to twin daughters in July 1999. We decide to wait until they turned 18 to have their carrier testing performed. They took their tests in August 2017. During their first week away in college they got their results.  One is not a carrier the other is. I found myself guilt ridden that I passed this nightmare on to my daughter but it was always a possibility.

In November 2019, I was diagnosed as an affected carrier. I am symptomatic, dealing with severe burning neuropathy in my feet and legs and numbness in my toes. Treating the discomfort has been complicated. 

ALD has not taken control of my life. It’s always been something horrible that my family has had to deal with. I am a survivor. I have endured the worst and continue to be afflicted by this nightmare. I will not give up. I will continue to research treatments and remain hopeful that medicine will find a cure. 

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