12 April 2018

Ian's Story

Hi my name is Ian Erentz and I was diagnosed with atypical familial partial lipodystrophy at age 25 years, as my endocrinologist could not understand why I developed type 2 diabetes being so young and slim. I was officially diagnosed with familial partial lipodystrophy after genetic testing. 

I always knew there was something wrong with me from age 13, as I never looked like others, even family members as I am the only person in my family that suffers from familial partial lipodystrophy. I was unable to gain weight and was very thin and gaunt in the face during my teenage years. Others also noticed my fat wasting and as a result I experienced extreme bullying and judgements about my appearance from a very young age. This lead me to develop body dysmorphic disorder, which had a significant impact upon my life for many years. In recent years I have overcome my body dysmothic disorder and I feel comfortable within my own skin.

Since my diagnoses my lipodystrophy has progressed significantly in terms of metabolic abnormalities, although I have now excepted this condition and with help from others with lipodystrophy I am managing to deal with the complications that have occurred as a consequence of having such a rare disease.

As lipodystrophy is such a rare unheard of condition I am determined to raise awareness and to help others that are having a hard time coming to terms with their diagnoses, as diagnoses is a grieving process.

Talking to others with the same illness made me feel more "normal", not alone and allowed me to come to terms with having a rare disease  and this is why I am passionate about helping others come to terms with their diagnoses.

I am determined to raise as much awareness as possible about lipodystrophy so hopefully others will have early diagnoses and will not suffer the torment and bullying I had to sustain.

I am very lucky to have met such wonderful people and I thank you all for your love and support.


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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.