World Wide Lam Awareness Month

  Can you say Lymphangioleiomyomatosis? Let me break it down for you - Lymp -angio -leio- myo -ma - tosis.  What a mouth full.  Us Lammies and the medical profession call it Lam.  So much easier don't you think! What is Lam  or Lymphangioleomyomatosis you ask?  Here is the link to the Australian Lam organisation. …

Osteogensis Imperfecta & Lymphangiomiomatosis

28th February is Rare Disease Day around the World.  Please welcome Kat and her post about Lymphangiomiomatosis and Osteogenesis Imperfecta (OI).   Every year on the last day of February is Rare Disease day, globally. While every year of my life I acknowledge the day, I have never been involved in proceedings or shared my experience …

“You have a collapsed Lung”

February 28th is Rare Disease Day all around the world. Today I am sharing with you a guest post - Lauren who has Lam -Lymphangiomiomatosis.   Thank you so much Lauren for sharing.   “You have a collapsed lung”. I looked at my husband Chris, whose face went white. “What does that mean?” he asked. …

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 …