Its Rare Disease Day 29th February

On the 28th February  every year marks Rare Disease Day.  This year its on the 29th February - Leap Year.  I have two - Tuberous Sclerosis and Lymphangiomiomatosis.   When I was young around 6 I had some suspicious lumps removed from my face.  I remember having them and then not having them.  I know …

Lam Lung Disease and Tuberous Sclerosis

  Its Rare Disease Day on the 28th February so I wanted to share a bit more about the  two rare diseases that my youngest daughter and I have.   When I was young around 6 I had some suspicious lumps removed from my face.  I remember having them and then not having them.  I …

May 15th – TSC Global Awareness Day

Today is TSC Global Awareness Day.  You might ask what is TSC?  It stands for Tuberous Sclerosis Complex.  Tuberous Sclerosis affects the eyes, skin, brain, kidneys, liver, lungs, and some also have epilepsy. I have Tuberous Sclerosis Complex and so does my youngest daughter Jennifer. I was officially diagnosed when she was 1. TSC in …