Without hesitation: Joel navigates the long road of aTTP

Joel made his living driving a semi-truck cross country. He loved the scenic beauty and the feel of 18 wheels of rubber as he traveled across the United States. Unfortunately, after four life-threatening medical emergencies while he was on the road, Joel knew his career as a truck driver had to come to an end.

In 2010, Joel had stopped in Little Rock, Arkansas, to get his truck repaired on his way to deliver cargo in Chicago. After spending the night in a local motel, he noticed purplish-colored spots on his face, back and side that looked like a bruise. He quickly wrote it off so he could complete the 650-mile trek to Chicago. He made the delivery feeling completely exhausted and with a migraine — the kind where he could see auras and lights in his peripheral field of vision.

“I told myself, I need one good night of sleep and I would feel better the next morning. I went to bed early but kept having the urge to go to the bathroom. I couldn’t go. I knew based on a previous job working in a dialysis clinic that it wasn’t normal and thought I might have a urinary tract infection,” Joel explained.

Joel was admitted to the hospital, but his team of healthcare providers did not have a diagnosis.

They called a hematologist. He ordered a blood sample and asked me about my symptoms. He recognized the symptoms as acquired thrombotic thrombocytopenic purpura. I spent 15 days in the hospital, 1,000 miles from home with a condition I knew nothing about,” Joel recalled. “After the diagnosis, I held my head in my hands and sobbed my eyes out.”

Acquired thrombotic thrombocytopenic purpura (aTTP) is a rare blood disorder that is a medical emergency and can be life-threatening. It occurs when there is a deficiency of an enzyme in the immune system (ADAMTS13) that causes blood clots to form in the small blood vessels, low platelet counts and destruction of red blood cells. For the estimated 2,000 people living with aTTP in the U.S., many experience a wide variety of symptoms, including fever, fatigue, headache, confusion and bruises or dots on the skin. aTTP can continue to impact people over the course of their life with recurrences.

The longer haul

About five years later, Joel experienced the fourth recurrence of aTTP and this time, he nearly died.

“In the middle of the night, I still couldn’t sleep and walked down to the diner to order some breakfast. I opened my mouth, but nothing made sense,” Joel recollects. “The waitress gave me paper and a pen — I wrote 911.”

Joel doesn’t remember arriving at the hospital and two days later, his family arrived to tell him he was in the intensive care unit on life support. He quickly realized he could no longer risk being so far from home if another occurrence were to happen. He walked away from the career he loved. Since then, Joel has had two more episodes.

“Before each episode, I go through denial. I think there’s someone else that needs that hospital bed worse than me. I try to brush off the signs, but it’s so important to seek medical attention immediately. Don’t wait,” Joel notes. “aTTP is life-changing and you can’t ever fully recover or forget something like this, but a positive attitude and having a good sense of humor has been very helpful.”

This article was written by and reprinted with permission from Sanofi Genzyme. Learn more on aTTP: www.understandingttp.com.

MAT-US-2024010-v1.0-12/2020

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