I Take Four Injections Per Day: Living With Lipodystrophy

I am a 17-year-old student and I’m aspiring to be an IAS, singer and a motivational speaker. I was diagnosed with lipodystrophy in 2019. I was 11 then. Here is my story.

To know the fact that you have a rare disease at a young age is shocking and devastating. It was and still is super hard for me to accept. At an young age being burdened with a rare disorder is a huge trauma. It feels like 100 mountains have crashed on you.

What is Lipodystrophy?

Lipodystrophy is an extremely rare condition that affects 1 in 10 million people. Lipodystrophy is divided into many types I was diagnosed with generalised partial lipodystrophy. I don’t have the fat absorbing tissue in my body. So the fat in my body gets stored in the other body parts and may ultimately damage them. The condition I have is also characterised by extreme hunger. And it also causes insulin resistance aka diabetes.

I have to take four injections per day to keep my blood sugar levels in control. My arms and legs appear super muscular like a bodybuilder. Since the fat tissues of my body are absent I cannot gain weight. My condition was found out by taking a genetics test. I developed the symptoms at age 11 which was initially considered diabetic.

My Support System

My parents were ready to deal with any situation because as a young child they have seen the hardships I went through and they were very supportive at the time of my diagnosis. My rare disease condition (lipodystrophy) is a secret to the other family members except for my grandparents and my siblings and parents.

I still remember in grade 4 my PT teacher asked me if I had a disease or I was building my muscles as a kid I didn’t understand much but now after knowing my condition when I think back it hurts.

I am a 2 PUC student aspiring to be an IAS and a singer. And I’m working on my first speech to spread awards about my experience with lipodystrophy to help others who are unaware of it. Many people are still unaware of this condition. But this condition is really hard to detect. My diagnosis was all thanks to my endocrinologist. To be honest my wish is to address a large number of people and create awareness about my condition.

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Living with lipodystrophy...

Although having lipodystrophy is traumatic it has positive sides too. I love to sing, draw, learn new languages, etc. I still remember in grade 4 my PT teacher asked me if I had a disease or I was building my muscles as a kid I didn’t understand much but now after knowing my condition when I think back it hurts.

As people just casually ask or stare at my legs and I was shamed for my legs since it resembles bodybuilders' legs and I know it's not my fault. But still, people make you feel guilty. It’s not people s’ fault but our societies’ since they have a particular social stigma and seriously need to be educated about the rare diseases which are out there and rather not just simply judge a person. As lipodystrophy is so rare that only over a few cases are recorded.

Lipodystrophy has a medicine but at the moment it is very expensive I would love to work towards making it affordable in India.

The views expressed are the author's own.