Is Anybody Out There?

It was so great getting someone responding to one of my posts. I was lucky enough a few weeks ago to have a lovely lady email me about getting pregnant with EDS. I felt really great being able to share my pregnancy and to put her heart at ease about getting pregnant. I was so happy to know that after reading my post and talking to her doctors, she has decided to have her baby after all. I seem to have so many people looking at my blog, but at times I felt like the only person in the world with EDS, but it was a total buzz to have someone contacting me! Then only a few days ago another woman simply said...."I know how you feel" and those few words made me smile and stopped feeling alone. 'A shared concern or worry if halved', or so they say, so let's get talking and sharing ideas so we have a support network who understands.

I'd love to hear from anyone........anytime!

Rowena

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 http://edsinnz.blogspot.com 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

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: http://georgiahealthinfo.gov/cms/node/105606gov/cms/node/105606

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.

The Princess and the Pea!

When I grew up there was a fairy tale which I always thought might be about me. 'The Princess and the Pea' was a tale about a wee girl who didn't know she was a Princess. One night she is lost in the woods and turns up at a castle. The Queen somehow thinks she may be a Princess in disguise. So when she is shown to her bed chamber, the Queen has played a sneaky trick and put a pea under 13 (or so) mattresses. If she was really a Princess, in the morning she would feel black and blue from the pea pressing into her fragile skin under all those mattresses. The long and the short is.....she was indeed a Princess after all. Then I realised I didn't really know when EDS was first discovered. If you are lucky enough to ever read any Jane Austen books, there is always a frail, pasty character with a weak disposition, maybe they had EDS. So I have done a bit of research and this is what I have discovered.

Ehlers Danlos Syndrome is one of the oldest known causes of bruising and bleeding and was first described by Hipprocrates in 400 BC. Then Tschernogobow from Moscow published his findings about the fragility of the skin associated with hypermobility of the large joints in 1892. Edvard Ehlers, in 1901, recognized the condition as a distinct entity. In 1908, Henri-Alexandre Danlos suggested that skin extensibility and fragility were the cardinal features of the syndrome. Edvard Ehlers (1863–1937), Danish dermatologist, and Henri Alexandre Danlos (1844–1912), French dermatologist, who separately reported it in 1901 and 1908. So there you are. If you were ever wondering where the name came from or when it was first discovered here is the short and sweet answer!

Love Rowena

x x x x

"Calling All Classic's Out There!"

DEAR WORLD,

You may have read bits about my life but I would really love to hear from anyone out there that has the same EDS as me, or anyone with any type. Drop me a line on this Blog and I can give you my email address. You don't have to feel alone in this huge world, I am here just waiting to share a line with someone who knows what you are going through! Can't wait to hear from you!

Love Rowena

x x x x

Sharing my scars for the first time.......again!

I have moved to a new school this year. I am always very excited to take on new challenges and new journeys. I am a person who thrives on change, but I also have the odd reservation about change. I find that when I go into any new situation I am more confident when people don't know about my EDS and don't see my scars. I am not ashamed of them, I just don't want the questions to start, or the side way glances. As a child my scars where blue, they were raw looking and stood out. Now I have scars almost as old as me, they are a lighter shade of beige, but they are saggy on my knees (as my photo's showed).

On my 'Teacher Only Day' this year, we went to Long Bay which is a gorgeous beach. On the information I received about the day, it said to take our togs for a swim at lunchtime. My heart sank for two reasons. 1) Being in togs with people I didn't know made me want to throw-up.....silly girl thing. 2) My scars would have been completely visible. So the togs stayed at home and only a few people even ventured into the sea, thank goodness. I worried about it for weeks before the date which is such a waste of energy. You will never find me in shorts, short skirts and I adore the cooler months so I can cover up and not have to explain my scars away.

I am single again at the moment as well. I always dread the moment when I have to tell the new man in my life that I have scars. To date this has never been a real issue and my Mum was right...."The man who loves you will not even see your scars". It's true (even though my last boyfriend was a total creep about it) but again explaining my scars, then my EDS is not always the easiest thing to bring up in a new relationship and when is the right time to bring it up.

I was a bit sad on Tuesday when my boy came home from his new school and told me he wanted to cover his legs up so no one would see his scars. I knew how he felt and it really hurt my heart that he had to go through the same things that I did. Luckily a hug from me and knowing how he felt, hopefully made him feel like he isn't alone with EDS on this huge planet. I would love to meet people with EDS in New Zealand or around the world, just to show my son that in fact we are not alone!

Love Rowena

x x x x

Having children when you have EDS!

I have already explained my pregnancy, but once my baby was here I would watch him sleeping and think, "Did you get my dominant genes or not?" Well once I came back to New Zealand I wanted to make sure. I made an appointment to see a genetic counsellor and was told I should wait until he was around 4 years old. So we waited. My mother knew he had EDS the moment she held him for the first time. It was how he felt, she told me that his skin felt just the way mine did as a baby. It was the craziest coincidence once I arrived at the appointment. Ingrid Winship was the person I was going to see and it turned out that I had been her sons Kindergarten Teacher. I had always known her first name but had not made the connection at all.

Well, Ingrid put my mind at ease immediately and said that if Tristan was to have EDS, then he would be fine because I was his Mum. She looked him over and saw his visible comparisons to EDS....flat feet, hypermobility in joints and velveteen skin. So it was official, my boy had got my dominant genes and he had EDS too. Ingrid was right, because I had EDS I could 'see' for my son where he may hurt himself, jar a joint and I knew how his skin felt and how gentle to be. Our skin doesn't feel connected to the muscle, so if someone pulls your arm skin, it feels as it is being pulled off, like a burning sensation. Brushing our hair is sensitive too, as our skin moves and pulls away from the scalp it hurts.

My son did have his first really big accident at almost 5 years old. He was helping his Mummy hang out the washing and was standing on a plastic chair. The chair wobbled and he slipped and he scraped his shin on the chair. I heard the cry and couldn't believe the gash and his skin was torn away from his shin bone. I couldn't think. I picked him up, and actually couldn't remember how to drive. My heart was thumping in my chest and I couldn't believe I was dealing with this so badly. I called Mum and thank god for her, she was able to calm me down and she took charge. We rushed to the A & E and they sent us straight to Middlemore Hospital. The gash was so deep it needed to be stitch inside and out. He was still only 4 so the doctor needed to give him a general anaesthetic as he would be having plastic surgery. Then I had to sign a medical waver and I lost it. I was so upset that I had to sign a piece of paper which told me that my baby may not wake up under the general anaesthetic. I signed it as I knew my baby needed to be mended.

Mum and I watched our baby being wheeled away screaming and wanting his Mummy. I have never felt so helpless in my life and I wanted to go with him. I wanted the split leg, I wanted the pain and I wanted him to never have EDS in the first place. I cried for the whole hour we waited to hear how he was.

It turned out he was absolutely fine, thank the heavens. His scar healed really well thanks to the fantastic plastic surgeon. He was up and running around within a week and he was given antibiotic cover for any infections that may occur. Tristan went on to have two more big scars but again he came through it and was a brave boy.

I just need to tell all the people in the world that may read this, that I truly believe that my Tristan is a blessing and the most amazing and incredible child any mother could ask for. Like me he takes his EDS in his stride and isn't a victim with it. He is happy, caring, kind and so special. I am truly blessed.

Love Rowena

x x x x