Tuberous Sclerosis Complex

You may be a part of our life, but we refuse to be defined by you - Heather Lens

Tuberous Sclerosis Complex

image by: Tuberous Sclerosis Association
     

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Dear (Not So Dear) Tuberous Sclerosis

Dear (Not So Dear) Tuberous Sclerosis,

I despise you.

You have brought pain to my family since the day your name was so gravely spoken. Your tag line of “incurable” ripped through my heart like a million razor blades tearing it to shreds. You have made me doubt myself and my ability to care for my own daughter. Your dooming prognosis made me want to run away. I still feel ashamed when I think of those fleeting thoughts.

I have never been faced with a problem that I couldn’t fix,…

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Last Updated : Tuesday, May 31, 2022