What is so amazing about our community of EDS families and sufferers is that you cannot always see the pain and suffering.

You can’t see the work that goes on behind the scenes to keep our families well.

Sometimes we cannot cuddle our girls as they are just so sore, but we keep upbeat with our own language of love.

We have sparkle time with our eyes. What fabulous communication secrets can you share with our other families?

My girls and I now have a name for the odd things that have been happening to them over the years. This is just great.

We know where we belong. We belong and you do too.

Welcome to our hyper mobile, Ehlers Danlos community.

Diagnosis (Greek: διάγνωση, from δια dia- “apart-split”, and γνώση gnosi “to learn, knowledge”) is the identification of the nature of anything, either byprocess of elimination or other analytical methods.

I find the “apart split” bit accurate. That is how you feel isn’t it? Split apart with information that your child has a condition with a name.

On one hand it is a relief to have an answer, a fact that removes doubt and mystery.

On the other hand it is a ball of fear coming at you.

You want to tell people so you don’t feel alone but telling makes it real and that makes you feel worse.

How can you reassure friends and family when you aren’t sure what lies ahead yourself?

You want information to calm your fears but information just increases them.

You want to talk to other mothers of children with this diagnosis and at the same time you are anxious about what they might tell you.

You are in a little boat on a sea of fear. If you’re lucky you and your partner can share this experience. Often couples deal with worry in different ways and that can make it even more difficult for you and your bruised heart.

You might want to talk, your partner may want to forget about it for a while. Maybe it is the other way around.

The medical folk stick to the facts. They can’t get to where you are really hurting and comfort you.

You feel alone but you are not alone. We have been where you are right now. We understand some of the feelings of shock, anger and grief. We understand how worried you feel.

I wish I could come to your kitchen and make you a cup of tea and sit with how you are feeling today.

Each day there will be different feelings. A parade of feelings and some of them difficult to bear.

I understand that right now it is too fresh to want to talk to any one at all. If that changes please come and find us and drink tea.

In the meantime don’t let fear take you over. There is so much joy and light ahead for you and your child.

Here is the latest comment sent to us.

“This is great information for me. My son has Autism, mostly non verbal but is in extreme pain. One thing he does “say” is “my brain hurts”. He has recently been diagnosed with Classical EDS after years of trying to find an answer to why he is in such severe pain. With his Autism, the doctors did not believe me and though I just didn’t understand my son. Finally a diagnosis. He just points to just about every joint in his body at different times and says “hurts” as well as having EXTREME fatigue.”

I am so pleased this information is helping people. Please consider writing down your experience and sharing it with others – together we are building our own knowledge bank.

Armed with the right resources each of us can help educate doctors about the care of children with Ehlers-Danlos.

The Ehlers-Danlos National Foundation have published an excellent checklist of things that you might want to get your child checked for.

This is prepared in a PDF so it is easily printed out. Ehlers-Danlos Pediatric Summary.

By sharing this information with your doctor you are helping spread the word about Ehlers-Danlos. This may help in the early diagnosis of other children in the future.

Dustin called me today from D.C. and wanted to share with me what helps him get through the day.

Dustin Wood lives with EDS too and sent a YouTube link.

You may hear words from people that don’t really fit in with your personality. We all hear those harsh words and it is up to us to to file what needs to be filed and take on board the best parts of those conversations to enhance our own D.N.A.

Living with E.D.S. is invisible and it plays on your mind, some days.

So today is the day that you take ownership of your D.N.A and build a platform for your personality. Greatness comes to those who have the desire to grab. WITH BOTH HANDS!

Check out this.

Sometimes you get lucky and you find a professional with personal experience.

I recently came across a great blog post on The Eye Doc Blog that talked about Dr Diana Discoll’s address on the ocular effects of Ehlers-Danlos Syndrome (EDS) at the Ehlers-Danlos National Foundation meeting in Houston last year.

Dr Discoll has Ehlers-Danlos and she was able to put together information that people with Ehlers-Danlos can print out and take with them to their eye doctor.

Follow this link to The Eye Doc Blog.

The question was raised about whether difficulty waking was linked the Ehlers-Danlos Syndrome. I sent off an email to the Ehlers-Danlos Foundation in the U.S asking if there was an study into this.

My thanks to Susan Jenkins at the Foundation for sending us this abstract of some research conducted in 2006.

Here is the link to this Sleep Study.

Basically, the starting point of the study is the observation that people with EDS often complain of disturbed and non refreshing sleep.

The question the study explored was whether the sleep disturbance was related to chronic pain or a separate part of EDS.

The conclusion suggests that it might be a separate part of EDS and that more study would be needed to prove it.

So when a parent asks about whether the difficulty to wake her child may be part of the condition of EDS – I guess the answer is a tentative yes, probably.

There are two other lists that accompany this.  The first are positive things that kids say about having Ehlers-Danlos. The second are things parents noticed when their children were small.

I think that even if one parent finds this list when they google a phrase like “heavy muscles” and is able to find early physiotherapy and some answers our little research project would have been worthwhile.

You can visit Ehlers-Danlos List of Descriptive Phrases and add your own using the contact form at the bottom of the page.

• “My bones feel like cement.”
• “My muscles feel heavy.”
• “I am sick of feeling so tired.”

These children experienced disadvantage at school because-

They  might find it difficult to hold a pencil and write.  This might lead to the conclusion that they are “slow learners”.  They can’t keep up with class work and might be judged as lazy by teachers.

Discomfort makes it very difficult for them to sit still in class.   They are often in trouble for fidgeting.

Many, but not all, children with this condition may lack co-ordination.  This means that they are the last to be picked in team sports.

I heard of one case this morning where the child became so humiliated by her experiences at school that she became depressed and suicidal from a young age.

School can be a tough environment.  Teachers under increasing pressure to get results can be frustrated by children who appear to be unco-operative.

Better information for teachers could lead to earlier diagnosis and physiotherapy for the child.  It also could lead to a more understanding classroom environment.

I would love to collect all the phrases kids use to talk about the experience of Ehlers-Danlos.  It is possible that parents may be searching with these very phrases to better understand what is happening to their child.  Our list might help them find answers and help a bit earlier.

If your child has been diagnosed with Ehlers-Danlos or Hypermobility disorder please send me the words they use to describe how they feel –  we will publish this list on our website.