Today is Rare Disease Day all around the world. I would like to share with you a friend of mine Erin and her post for Rare Disease Day 2018. Erin has an amazing blog over at https://achronicspoonful.wordpress.com/2018/02/27/rare-disease-day-february-28th/ The 28th of February is Rare Disease Day. It’s a day designed to raise … Continue reading Klippel Feil Syndrome (KFS) & Complex Migraines & Gastroparesis
rare disease day 2018
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 … Continue reading Osteogensis Imperfecta & Lymphangiomiomatosis
“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. … Continue reading “You have a collapsed Lung”
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 … Continue reading Lam Lung Disease and Tuberous Sclerosis