Happy New Year 2018

Happy New Year to you all!

I hope 2018 brings you good health, no pain and happiness.

It has been so long since I have written in this blog and the reason is because I am still waiting for my skin biopsy results. The results with my biopsy is that the gene encoding (COL1A1) can not be found. So my diagnosis in New Zealand way back in the early 1970's is being disputed. I have 9 out of the 9 characteristics of Classical EDS (Type 1) but that gene code is not willing to show itself for it to be 100% diagnosed. My wait continues.

Now here is my exciting news. My aortic root is still holding strong and it has been 7 years now. My next check up in November this year and I will have MRI scan this time (I am use to these). My cardiologist just wants to get accurate measurements. I have been really happy with my heart care at St Georges Hospital and have felt really well looked after.

It has been 5 years now since we moved to London and my son is now in his 2nd year of Uni. He has grown from a teenager to a gorgeous, healthy and strong man. I am trusting my heart and joints so much more and have asked my cardiologist if I can exercise more now. They have said I could, as long as I am only giving 80% of my top effort, so my aortic root is not working too hard.

So for 2018 my New Years resolution is to be as healthy as I can. I want to lose the 20kgs (44 pounds) I have gained over the last 7 years, as I was too scared to exercise too much. I want to gain back to muscle I have lost, which will in turn strengthen my joints.

What are your New Year resolutions?

Love Rosie XXXX