Contact details

As well as being a freelance writer I am also a qualified counsellor and I work for a low cost counselling service in Exeter and for the NHS Gender Clinic also in Exeter.

Simultaneously, I work as a Disability Member of the First Tier Tribunal, Social Entitlement Chamber sitting on disability benefit tribunals on an ad hoc basis.

As a writer I specialise in writing about disability and health.

My articles have been published in the Guardian, Times, OUCH! [BBC disability website], Disability Now, Broadcast, Lifestyle [Motability magazine], The Practising Midwife, 'Junior, Pregnancy & Baby', Writers' News, Able, Getting There [Transport for London magazine], Junior, Community Care, DPPi [Disability, Pregnancy & Parenthood International]. I have also had articles commissioned by Daily Mail.

For more information about me and for examples of my writing please see below.

If you would like me to write an article for your publication, about any aspect of disability, please do get in touch:

Wednesday, December 10, 2008

The Power of the Internet

When you have a rare condition [and/or a child with a rare condition] the internet is such a powerful tool for finding others with the same condition. That can then be an amazing source of information, support and comfort because having a rare condition can be quite an isolating experience.

As Archie's broken a few bones recently I e mailed an e mailing list for people with Kniest/SEDc and asked if this was a common occurance, seems like it is. Although I'd rather he didn't break bones, knowing that it is 'normal' for some Kniest children [wasn't a regular occurance for me I have to say] was reassuring.

I've also come to realise through belonging to that group how lucky we have been with Archie in terms of him being able to walk, as there are other children with Kniest who can't walk or who use wheelchairs. I'm not sure how much that has to do with the fact that we never contemplated the idea that Archie wouldn't walk, because I can walk. And I wonder how much can your expectations of a child's development can influence their final ability?


Amy said...

Hi Emma,
My name is Amy. I have Kniest and live in the US. I recently discovered your blog. I think expectations do play a big role and also the family's attitude torward walking. Although I have met children with severe Kniest who truly can't ambulate well but its rare. A lot of it is encouraging the child to walk and excercise and just bulid strength.

Oh by the way, I broke lots of bones as a kid especially during growth spurts. If you haven't already consider Ca and Vit D (over the counter) with your doctor for him, I know a lot us have ended up with osteoperosis or the beginnings of it.

Shanta Everington said...

Hi Emma

Just popped by to say Happy New Year to you. Hope 2009 is happy, healthy and full of surprises!

Shanta x

Shelly and Tom said...

I am also part of the Kniest/Sed forum. My son (15mo) has Kniest. I am not a regular contributer but I enjoy reading up on the issues presented. I have also been so thankful for the answers I've received when I've posted a question.

I couldn't agree with you more when it comes to expectations! My husband & I have always said he is perfect just the way that he is. He is capable of many things and he will accomplish exactly what he needs to accomplish. Although his path in life will be a bit more challenging than his brothers, he has the personality to make up for anything he lacks.

Thanks for blogging!