17 February 2017

Maureen's Story

​"I have been an advocate for myself since I was diagnosed with FPLD in 1978, at the age of 18. Very little was known about Lipodystrophy at that time, therefore, I needed to be vocal and share what knowledge I had with the medical professionals I encountered. I became the teacher and I will continue to teach to whoever will listen and raise awareness! From mild to severe, I am at the severe end of the spectrum. Coronary artery disease has been my biggest challenge with two multiple bypass surgeries, five heart attacks with 22 stents and counting. Insulin resistant diabetes, pancreatitis, fatty liver, polycystic ovarian syndrome, neuropathy, high blood pressure, hypertriglyceridemia, hyperphagia (that incessant hunger), acanthosis nigricans, hyperhydrosis, sleep apnea and chronic tendonitis round out my list of complications. All resulting in chronic pain and disability. Oh, did I mention the buffalo hump, massive double chin and the continued fat wasting? I can handle all of the clinical medical issues, that's my "normal". What I have ​​personally struggled with most is my appearance. This can be an isolating disorder for some of us where others have gloriously embraced Lipodystrophy. Join one (or all) of the Facebook support groups we've listed because it can be life-changing to know other people who are sharing the same struggles and successes that you may be experiencing. I encourage each of you to take a similar approach to what I have, learn all you can about LD and accept your role as an advocate in living with this quirky, rare disease. And, it certainly can be quirky! My hope is that no one touched by Lipodystrophy will ever have to walk this path alone. I have met some amazing people in my journey and it is time to share our knowledge and our strength. I consider myself Blessed to see us United!"

~ Maureen Callahan-Norcross, Northern New York State, USA ​

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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.