I Love That I Have Tropical Spastic Paraparesis – One of the rarest diseases on the planet


Here is some interesting trivia:

There are over 7 billion people on the planet. Of the 10 to 20 million people in the world thought to have HTLV-1, this means between 100,000 and 800,000 people who are affected by this will go on to develop HAM/TSP (Tropical Spastic Paraparesis).

So, I calculated this:

  • 800,000 is 4% of 20 million out of 7 billion people
  • 400,000 is 4% of 10 million

In other words, you can be a carrier of the virus and never experience any symptoms. I saw a leading virologist at Johns Hopkins in 1997. I had already known that both my parents carried a particularRh factor. Their doctor told them not to have children.

The Rhythm system failed my parents. Mom gave birth to four of us.

My body exhibited hints of each symptom from the onset. My virologist said bad luck and an inherited gene contributed to the rapid exacerbation.

However, it’s a blessing. I’m lucky that’s all that happened to me. My captors could have easily killed and disposed of me, or I might have overdosed from drugs, died from cutting my wrists, or contracted AIDS as well.

Instead, I lived and since this disease is so rare, people remember me, especially those in the medical field. It helps me maintain and develop relationships. It sets me apart from a limited pack. (Of course, there are many other rare diseases in the world).

Still, my goodness, what are the odds?

My hair turned gray after a eleven-month stay in a nursing home. My IVs pumped over 300 antibiotics into my veins yo get a 104.5 fever and a bone infection under control. The result?  My beautiful dark brown hair evaporated and snow grew from my roots. (As you can see in this old photo)

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