Saturday, April 18, 2009

Dearest Oprah

Dear Friends,

Now I thought that maybe because EDS is still a very quiet entity, maybe going to Oprah to hear our voices is a great place to start. Here is the letter I sent:

Dearest Oprah,

My name is Rowena Lee Brewer and I am from Auckland, New Zealand. I love your shows and I really like the DR Oz segments. I have a genetic condition called Ehlers Danlos Syndrome. I have started a Blog in New Zealand and I am amazed at how many people (who have read it) are from America. EDS is HUGE in America and I just thought as it can actually be undiagnosed for years, that maybe a small mention of the several different types may be a great way for people who may have this, to understand it. I have Classic EDS and so has my 11 year old son Tristan. We are so lucky compared to some people affected by the other types. I know overall this is a story about a very small part of the population, but awareness of any condition makes such a huge difference to the people who are affected and a voice can shatter the silence of living in isolation with any genetic condition. Thanks to your voice, this world has become a much more informed place to live!

Love Rowena

Fingers crossed she hears us!

Love Rowena

x x x x

Friday, April 10, 2009

Clear, concise & positive information!

Dear EDS friends,

I have decided to start my blog entries like this after realising how many people have been checking out my blog! So hello there new friends!

Now, I always take time in the weekends to search the web for some more helpful information for myself, my son and this blog. I have found the best website for anyone who has EDS and wants to share this information with a family member or friends and also for people who have just been diagnosed. Here is the address:

I am so impressed with how concise the information is and it is factual without scaring the pants off you. Well done Georgia Health, you have definitely got a 5 star rating from me! Take a look, it's great!

Love Rowena

x x x x

P.S: I had to share this amazing personal fact. My gorgeous baby now has bigger feet that his Mum. He also has the very traditional EDS flat feet just like his Mum too. This was taken on a weekend away in Raglan which is situated on the Wild West Coast of the North Island of New Zealand. The sand is black and full of iron shards.