#dandy-walker malformation

I'd like to start by saying a huge thank you to everyone for your support and love after my recent surgery, it truly means so, so much.

As it's Rare Disease Day once again, I want to share my experience in the hope that it helps someone out there to not only understand what it's like to live with a rare disorder, but also to feel a little less alone. So, let's get down to it.

For those of you who don't already know, I was born with a Dandy-Walker malformation and an atrioventricular septal defect specifically known as Tetralogy of Fallot. ToF is characterized by four defects, and according to my current surgeon, my case isn’t textbook. God's plan was to make me as unique as possible!

I had corrective surgery at just 5 weeks old, and my second repair in October 2022. I’ll need further surgeries in the future.

While ToF is one of the more commonly known conditions, DWS is largely unrecognized. Even the specialists I’m under don’t know everything about DWS. That’s the trouble with a disorder with so many variants.

According to statistics from the Dandy-Walker Alliance, 1 in 10,000 children are born with DWS. It’s also more likely to affect women than men. Some people don't live past the age of 40.

My malformation and co-existing symptoms are milder than they could have been. I’m one of the lucky ones who won’t need a hydrocephalic shunt, or end up in a wheelchair, but for some, that’s the reality of living with DWS.

The defining trait of Dandy-Walker Syndrome is an abnormality of the cerebellum, forming a cyst at the base of the skull, and complete absence of the cerebellar vermis. In severe cases, increased cerebral fluid is present. Children born with DWS will have delayed development and poor motor control. My hands mirror each of their movements, and I occasionally experience myoclonic jerks.

Another side effect of DWS is epilepsy. I've had a lifetime of headaches, dizziness and seizures. There are 41 different types of seizure, and I can experience any one of them at any given time. So in short, it's sometimes a real chore to get through the day! But in spite of it all, I've managed to live a reasonably normal life.

I turn 30 this year, and I've been thinking a lot more about my future goals, because as I'm sure you know, women face a lot of pressure to have their shit together by the time they turn the big 3-0. I’m a woman who would love to have children, but know that because of my health, it might never happen. Or if it does happen, there’s a significant chance my child could end up with all the same health complications I have. I can’t count the times I’ve kept myself awake at night, sometimes even cried because of it. Sometimes it’s scary having to admit and accept that. However, I'm a big believer in the old adage 'where there's a will, there's a way'. It's gotten me this far, and I don't intend to let anything stop me from living the life I deserve.

If you're reading this and you have a rare chronic illness or disability - or any disorder - I hope you take a little time today to remind yourself of how unique and wonderful you are. Take pride in being perfectly imperfect.

More than one million Americans live with Hydrocephalus. As it's one of the lesser known neurological conditions, it's so important to raise awareness and show support for those living with it.

May is Dandy-Walker Awareness Month.

If you'd like to learn more and support a brilliant non-profit organization, visit the Dandy-Walker Alliance website.

This month, I'm aiming to raise awareness of this rare condition and give you an insight into what it's like to live with DWS.

As a way of celebrating not only myself, but also other women with chronic illnesses and disabilities, I've started the #someonestrong campaign. If you'd like to share your story and help me get this off the ground, please go to the Someone Strong blog. I hope to create a safe space for women to share their experiences, form friendships and most importantly celebrate their strength.

I'm Lauren, I'm 29, and I have Dandy-Walker Syndrome. I also have a complex congenital heart condition.

You might be wondering, what exactly is DWS? What heart condition do I have? Well, I'll tell you. Because it's a little complicated.

I was born with a Dandy-Walker malformation and an atrioventricular septal defect, specifically known as Tetralogy of Fallot. ToF is characterized by four defects, and according to my current surgeon, my case isn't textbook. Always reassuring! I had corrective surgery at just 5 weeks old, and I'll need further surgeries in the future - in fact, I'm due to have my next surgery this year.

While ToF is one of the more commonly known conditions, DWS is largely unrecognized. Even the specialists I'm under don't know EVERYTHING about DWS. That's the trouble with a disorder with so many variants.

According to statistics from the Dandy-Walker Alliance, 1 in 10,000 children are born with DWS. It's also more likely to affect women than men. My malformation and co-existing symptoms are milder than they could have been. I'm one of the lucky ones who won't need a hydrocephalic shunt, or end up in a wheelchair, but for some, that's the reality of living with DWS.

The defining trait of Dandy-Walker Syndrome is an abnormality of the cerebellum, forming a cyst at the base of the skull, and complete absence of the cerebellar vermis. In severe cases, increased cerebral fluid is present. Children born with DWS will have delayed development and poor motor control. My hands mirror each of their movements, which means making coffee can sometimes be a little more dangerous! Over the years, I've learned to control my mirroring, but it hasn't been easy!

I started this blog as a way to document my experience, but also in the hope that someone else out there would find it and get in touch. After a while, I got to thinking - what if this wasn't just a blog, but a safe space for other women to share their experiences with disabilities and chronic illnesses?

As a result, Someone Strong was born. I'm hoping to turn this into a social media campaign to shine a light on women with rare conditions and the strength it takes us to get through each day.

Darla Rae, director of 2008 documentary 'Dandy Kids' is planning a follow-up documentary focusing on the lives of teenagers and adults with Dandy-Walker Syndrome.

The film is currently still looking for funding. You can read more about the film and help get it off the ground HERE:

The news of Henry's next project has literally just broken and I'm already seeing the thing I thought I'd see - 'another neurotypical actor playing a neuroatypical character...'

Can we just stop for a second and focus on the fact that this is a mainstream rom-com with a neuroatypical lead character. This kind of thing doesn't happen unless it's in some sort of dramatic heartstring-pulling sob story about a person's struggle. This is a lighthearted movie. It's meant to be fun. Not demeaning to neuroatypical people. This character is not portrayed in a negative light - he's one of those bumbling Hugh Grant types. Let it be what it is. The character is defined by his traits - the uptight, detail-oriented scientist - not by his being on the spectrum.

You like us when we're characters, not when we're shown as people.

This is an adaptation of a novel. How many neurotypical people will have picked up that book, bought it and enjoyed it? Many, I'll bet.

I'm not ashamed to talk about being neuroatypical. Anyone who knows me knows that I talk freely and light-heartedly about it. I advocate for the charity that raises awareness of Dandy-Walker Syndrome. I've been working on my own awareness project. Creating negativity around something that is rarely seen in mainstream media only makes the prospect of continued representation less and less likely.

I for one hope to see more rom-coms with neuroatypical characters in the future. We do have a sense of humor, you know. We're actually pretty cool.

Chances are, a lot of people criticizing this will be neurotypical themselves. You can't speak on what you don't know. Leave it to the experts to decide how this one goes.