19 March 2018

Cynthia's Story

CynthiaThis all started for me when I was 16, 5'5 tall and 110 pounds. At this time I was told that my triglycerides were over 550. I didn't know what triglycerides were at the time and nothing was done.

When I was 23 I woke up at 5am in my apartment with the worst stomach & back pain I had ever felt in my life. I drove to my mother’s house and had her take me to the hospital. I was admitted to the ICU for 2 weeks with triglycerides over 14,000. I had a fever they couldn't control, pseudo cyst and an NG tube to drain all the fluid. My small hometown hospital couldn't handle how sick I was or control my fever. They transported me via ambulance to The University of Maryland Hospital in Baltimore. I spent another 2 weeks in that hospital where I was told I was the youngest patient they had ever seen with acute pancreatitis.

I was told I couldn't work for 3-4 months. It was a painful recovery, but I had almost died from this, so I was thankful to be alive. I was started on medicines to help lower triglycerides.

A year latter I started with the same pain and again was admitted to the hospital. This time it was a combo of a gallstone stuck in the duct to my pancreas. I had emergency surgery to remove my gallbladder. I was again in the hospital for 2 weeks.

I then started developing other health issues, diabetes, darkened skin in areas on my body, weight gain only in my stomach, kidney disease, non alcoholic fatty liver disease, anxiety and depression, PCOS, infertility, herniated disks in my neck, joint pain, insulin resistance, severe pain in my shoulders due to calcium deposits, fatigue, hair loss, psoriasis, uncontrolled triglycerides, I could not loose weight even with a healthy diet and exercise. My doctors didn't understand what was going on and I was treated individually for each health problem. I was tested for Cushings and lupus and finally one of my doctors suggested I have bariatric surgery. All my doctors blamed all my conditions on my weight. No one believed that I ate healthy and exercised because of my body shape. It was really frustrating!

In 2008 I had a gastric sleeve and only lost 18 pounds and only during the liquid phase of the diet.

I was devastated, 18 pounds after surgery following the post op diet and exercise! The surgeon couldn't explain it and gave me diet pills. I still to this day never lost any more than the 18 pounds. I kept it off, so I guess that's something!

I had my next bouts of pancreatitis in Oct of 2014 and again in June & July of 2015.
It was at this time my kidney Dr. contacted the NIH and got me into the clinical trial.

I started in May of 2016 at the NIH and was diagnosed with Partial Lipodystrophy. It all finally made sense! Every single one of my medical conditions were from the Lipodystrophy, even my body shape!

I started on the Isis trial injection once a week. In one month my triglycerides went from over 2,000 to under 200! Today my triglycerides are 70! My triglycerides are lower now at 225 pounds then when I was 110 pounds. That's because this disease has nothing to do with weight. It has to do with weight distribution and for me that looks like all my weight in my middle. I have no fat on my legs, buttocks, feet, forearm and hands. My trial ends in Nov of 2017, but I will still need this medicine! For me this medicine has done what no other medicine has been able to do and that is to lower my triglycerides. This medicine has to be approved for people like me! We need more research into this horrible disease and we need your help!

Thank you,
Cynthia Wooters

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