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. …

May 15th – TSC Global Awareness Day

Today is May 15th TSC Global Awareness Day…

3 Sisters Abroad

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 my case was a mutant gene, however once you have this rare disease the chances of having a child with TSC is 50/50. 1 in 2 chance of having a child with TSC.  I do remember my parents being tested which came up clear.  I am the youngest of 4 so the chance of my sisters or brother having TSC was ruled out when my parents tests came up clear.  This meant something happened with the genes when i was conceived.  When I was 6 or 7 the doctors removed some facial lumps off my…

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Things I always carry in my bag

The Wine!

The last few days I have read two wonderful posts on "Things I always carry in my bag" and I thought to myself why not do a post on this.  The Happiest Pixel and Cheila's Blog is where I first read this post. How on earth do some men get away with just carrying a wallet in a …

Viviers – Ardèche Region

  By the time everyone came back from the Truffle Farm and Grignon Castle I was bursting to get out and do some exploring.  Being sick is awful, double that when away on holidays.  Poor Muriel, as soon as she came back I was like "come on let's go exploring in Viviers. " A quick …

6 Month Update on my Knee Injury

So its been 6 months since I initially injured my knee on the flight home from Paris.  6 months!  Where has the time gone? I am now going to physio twice a week.  Each time I go I am put through my paces.  30-45 mins of intense workout. Waiting on referral to do some physiotherapy …

Klippel Feil Syndrome (KFS) & Complex Migraines & Gastroparesis

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 …

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 …

Sunshine Blogger Award

I have been nominated by Esther from https://richerfortravel.wordpress.com/home/  who I have had the pleasure of meeting up through a wonderful support group on Facebook.  Esther is a fellow traveler and also chronic illness warrior. Please head over to her page and check out her travels to Italy and her latest post to Lego Land!  To be nominated by …