10 February 2017

P.L.'s Story

PL"When I was a little girl I was fairly healthy, but I was very skinny and had a big appetite.  When I reached puberty I developed a muscular look, my veins started popping out, and I got a double chin.  I was devastated!  I wanted to look like the other girls who were getting womanly curves.  Every night I prayed that I would wake up and look “normal.”  But when I woke up in the morning and looked in the mirror I still looked the same.  I felt so depressed and confused.  Puberty is not an easy time, especially if you look different.  It’s even harder when you start showing physical characteristics associated with the opposite gender!

    Like many other FPLD women I endured strange looks and comments such as:  “Do you lift weights?  Are you on steroids?  Why is your neck so fat? Have you had your thyroid checked?  You don’t have a butt—why don’t you have a butt!?!”  As a college student, my self-image began to transform in a positive way.  I took a women’s studies class in which body image was discussed.  We talked about societal pressures that women face—including the unrealistic expectation to always look a certain way.  A light went on!  I realized that all women—rather, all humans are beautiful in their own way.  I didn’t have to be a prisoner to what society told me was beautiful and acceptable.  This realization was life-changing for me!  From that point on, I didn’t feel so bad about my body.  I felt like I was special and beautiful in a unique way, even if some people could not see my beauty.  

In my late 20’s I faced new challenges as my health started to deteriorate.  Over time I developed the following medical problems:  Exhaustion, hyperphagia, digestive problems, tendonitis, muscle weakness, lipomas, peripheral neuropathy in my feet, gynecological problems, anemia, migraines, sleep disturbances, depression, fatty liver, and eruptive xanthomas.  I went to countless doctors and they didn’t know what was wrong with me.  My blood tests revealed high lipids (both cholesterol and triglycerides).  Then my blood sugar skyrocketed and I was finally diagnosed with type II diabetes although I knew that this diagnosis was not correct.

    I tried a variety of conventional and natural medicines, but nothing helped.  Conventional drugs were the most problematic because they were ineffective and they gave me horrible side effects.  Desperate to re-gain my health, I pushed myself to do strenuous exercise in the hopes that my lipids and blood sugar would return to normal.  I tried every diet imaginable.  Unfortunately, all my efforts were not enough to keep my heart healthy.  In my 30’s I was diagnosed with cardiac blockages and needed stents.

    Searching on line for answers, I found the description of FPLD.  I immediately knew that I had this type of lipodystrophy.  Honestly, when I saw the information pop up on the computer screen I broke down in tears because I finally knew what was wrong with me.  I had suffered for so many years and many of my dear family members had suffered too.  In the past, no one knew what was wrong with us.  Now we finally have the chance to live a better life.  I enrolled in a clinical trial for leptin replacement therapy and have been on this regimen for several years now.  Leptin saved my life.  It has drastically lowered my lipids and blood sugar levels and, equally important, it has regulated my appetite.  I no longer feel like I’m starving all the time!  I can eat like a normal person and not feel panicked about getting enough food to eat.

    Even with continued leptin therapy, I struggle with residual medical issues caused by two decades of untreated high blood sugar levels and high lipids.  Leptin is absolutely vital for me and I hope that the FDA will approve it for all patients who can benefit from it.  I hope the medical researchers will continue studying us because we can help them solve many problems in various fields (e.g. endocrinology, cardiology, genetics, etc.).  We are extremely valuable--not only as humans in our own right--but also as treasure troves of medical information.  So I want to thank all the health professionals who have helped us thus far.  Please keep assisting us.  We need your help.

    I also want to express gratitude to all the women who have shared their personal stories on this website.  You are such an inspiration and it’s a great relief to know that I am not alone in this journey.  Finally, I want to thank the special people who created this website and other on line resources for lipodystrophy information and support.  Without your vision and generosity our voices would not be heard."

    ~ P.L., USA

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