25 February 2017

Leanne's Story

LeanneIn Memoriam: We lost our brave and beautiful sister Leanne in 2016. Leanne had such a kind and open heart. She shared her battle with lipodystrophy with all who needed her. Her advocacy legacy as well as her loving heart inspire us daily. We will continue to fight in her honour.

"Hello, my name is Leanne Tavares and I was born with Congenital Generalized Lipodystrophy (CGLD). I was diagnosed when I was a year old. Spending most of my 1st year of life in the hospitals doing all sorts of testing for the liver and other organs that were slowly shutting down, I finally got to feel what it was like to go home and spend some quality time with my family. At, age 5 it was announced that I was a diabetic and needed to be put on medication to control my sugar levels and also my appetite was so large that I would eat uncontrollably and didn't know what it felt like to be full. Elementary school was very hard for me because of the constant bullying physically and mentally and would often fake to be ill to stay home because I was too afraid of the bullying to get worse. I remember in grade 3 I got cornered and got punched in the stomach several times that I fell to the ground and had blood on the side of my mouth. I felt like this was something that would be following me the rest of my life and didn't want to feel this pain. Throughout the rest of my elementary school the bullying continued into high school where wanting to take my life became more of a solution at the time for me. I have an older sister and I always looked to her and wanted to live in her shoes because from what I witnessed her life seemed to be the life I wanted to have. In grade 9 I would get shoved to the ground and shoved into my locker time and time again. Throughout my childhood and teenage life I would miss a good amount of school because of consistently going to appointments making sure that all my liver functions were on the stable side and making sure that everything else was normal. But everything was far from normal when it came to my health. I was put on the liver transplant list for a year and also my kidney’s functions were going down because of the amount of protein that my body was producing; my legs were swelling and became noticeable because of how my body was so muscular anything that would swell would be noticeable. I was always a fan of children and wanted to grow up and be able to help children and youth with their battles and help them understand that life is more then it seems at times through the hardship. I was told at a young age that I wasn't able to have kids because I had cysts on my ovaries which made it hard to conceive which for me, even though I was young, it hit me hard. At, the age of 13 I was told about a drug called Leptin that was a research drug and they weren't sure if it would work, but if I wanted to go to Washington and see if it would help me, we would take it from there. After being on Leptin for 10 years, Leptin has been my miracle drug and I don't know what I would have done without Leptin. I had 3 cousins who've CGLD and passed away in their 30's and I have a younger cousin who is in Portugal he is 11 years old. When after being on Leptin for so many years I have become so thrilled that my cousin has something to reach out to so his medical issues can become better and life won't become a challenge so much as it was for me in my childhood and teenage years. After being on Leptin, my liver functions are normal and I am not on the transplant list anymore. My kidney functions are normal as well in which makes a massive difference again in the swelling that I use to have. At my last visit to the National Institutes of Health (NIH) I found out that I no longer have cysts in my ovaries and I am now able to have children later on in my life which makes me so content being able to have what I always wanted - a family. I am honored that now there is awareness out there about Lipodystrophy and that there is something like Leptin out there to help so many others out there!

I am honored and proud to have shared my story and also am honored to have met everyone who I have met throughout this journey in life."

~ Leanne Tavares, Woodstock, Ontario, CANADA​

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Help others learn about Lipodystrophy by sharing your story. Your personal journey will help inspire and connect other Lipodystrophy patients and inform rare disease stakeholders and the public about this rare disease. Raising awareness through story-telling is an effective way to advocate! Email Global Genes to learn more.