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In Your Own Words... Ali Mahraj

Ali has spina bifida. She's a Shine member and active participant in our Shine40Plus group. She's also the author of a series of stories, titled 'Dear Body', which illustrate the frustrations of living with spina bifida and hydrocephalus.


Read Ali's story here...

    • Members Stories - Ali Mahraj

Today [25th October 2016] is world spina bifida and hydrocephalus awareness day and all over the world people are posting facts and teaching people what spina bifida and hydrocephalus are and what they are not. Sorry hydro friends - I don't have hydro so I will leave hydro to those who know and live with it.

But this year I'm done with explanations about what sb is. I want to tell you about what spina bifida has taught me over the years because the lessons I've learnt from it can be of use to everyone- able bodied or not. So here goes.

Spina bifida has taught me :

A respect for my body: You know that feeling when you wake up with a hangover having drunk too much the night before? If I walk too much or stand too much I get a hangover too. The next day my pain flares up, my legs twitch,my balance goes and I actually look drunk. So you adapt and adjust. We only have one body- respect it.

To be patient: I watch people rushing about at 100mph and I feel sorry for them. Yes sometimes I wish I could get around quicker but when you can't there's something very grounding about it. You realise it doesn't really matter. Our whole lives we spend rushing around rather than taking in our surrounding and observing people. It really is fascinating. So on awareness day do this for me- slow down and observe. You won't regret it.

To not take anything my body does for granted: It's never been easy to walk and recently it's become almost impossible but if you come close enough to me after I've done something difficult you will hear me whisper to my body- "thank you". We are quick to complain when we have a cold but when you are well do you ever stop and appreciate it?

Not to judge people based on a label: Spina bifida doesn't mean you can't walk or that you have no sensation because there are as many variations of SB as there are people. So if you need to know how SB affects someone, stop googling and ask them. Every person with sb will give you a different answer because we are all different like you.

If you look for the good in people you'll find it, if you look for the bad you'll also find it. So look for the good. My late nan used to say that to me and it's true. It's also true about disability. If all you ever do is define someone by their disability you will only ever know a small part of who they are.

That strength has nothing to do with physical strength even when it's physical strength that is required. My SB has taught me solutions to problems that I KNOW I'd never had discovered if I relied on physical strength. I've learnt that calming a child having a tantrum can be done without lifting him up and carrying him out of a shop and I have a better bond with him because of it.

That your body has a lot of things to teach you if you LISTEN to it. There are times I want my body to do stuff and it won't but when I listen to it it teaches me. For example a Physio asked me a couple of years ago who had taught me the method for getting up from the floor that they teach stroke patients. She was amazed when I said no one. My body had taught me a method that she trained for four years to teach others.

That your body will protect you if you listen to it. There are things I do naturally to avoid back pain that I've discovered other people don't. Ask yourself- when you load and unload the dishwasher do you take the cutlery basket to the cutlery drawer or the sink when loading or do you bend down several times to take all those teaspoons out? When you take a supermarket trolley to load your car- do you push it right up to the lip of your boot or do you lift each bag up and over from the side? My spina bifida taught me that. It's helped preserve my back as much as possible and that's helpful for everyone. Start protecting your back

And finally the greatest thing sb has taught me is to let go. On days when I'm frustrated because I just can't do anything fast enough I HAVE to just LET GO. And when I do I realise that whatever I was trying to do can wait. Try letting go of all the things you are anxious about and instead of doing - stand still and reflect. Life doesn't have to be that way.

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Did You Know?

Some babies with spina bifida are now operated on before they are born, via keyhole surgery.

Hydrocephalus can be congenital or acquired.

NPH (Normal Pressure Hydrocephalus) is an excessive build-up of fluid in the head.

Hydrocephalus is a build up of excess fluid in the brain.

Some 11 - 35% of people with Intracranial Hypertension recover spontaneously!

Most babies with spina bifida undergo surgery within 48 hours of birth.

“Every effort should be made to ensure that all children are immunized, no opportunity to immunize should be missed.”

If you have spina bifida +/or hydrocephalus you should receive the same vaccinations as any others, when going abroad.

Hydrocephalus comes from the Greek "hydro" meaning water and "cephalie", meaning brain.

Some forms of hydrocephalus require no specific treatment.

Medical advice should always be sought if shunt infection is suspected!

Shunt: a device that diverts accumulated cerebro-spinal fluid around the obstructed pathways back to the bloodstream.

Possible signs of chronic shunt blockage include: 
fatigue, general malaise or behavioural changes.

A shunt alert card should be carried at all times by people with hydrocephalus treated by a shunt.

Possible signs of acute shunt blockage may include: visual disturbances, drowsiness and seizures.

Symptoms of Normal Pressure Hydrocephalus are similar to Alzheimer's, Parkinson's disease or simply increasing age.

NPH (Normal Pressure Hydrocephalus) occurs most often in people aged over 60.

Benign Intracranial Hypertension aka Idiopathic Intracranial Hypertension affects about one or two in every 100,000 people!

Symptoms associated with raised intracranial pressure; headache, visual disturbances, photophobia, vomiting, problems with balance...

Diagnosis of Intracranial Hypertension is by scan + measurement of the CSF pressure.

Babies born prematurely are at increased risk of developing hydrocephalus.

Shine can raise money by recycling your used inkjet cartridges, toners or CDs and DVDs.

Para-athletes with spina bifida and hydrocephalus compete in sports ranging from cycling to dressage.

Hydrocephalus may affect memory, concentration and behaviour.

The usual treatment for hydrocephalus is to insert a shunt into the brain.

CSF stands for cerebro-spinal fluid.

Benny Bear is a teddy with hydrocephalus who helps children understand the condition.

Shine is always looking for Marathon Runners to help with fundraising.

Spina bifida occulta is a hidden form of spina bifida.

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