[iamsomeonestrong]

Hi!

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.

So, if you're reading this, please join me and share your stories. I look forward to meeting you x

[iamsomeonestrong]

hey there! my sister has dws along with another rare congenital disorder and i just wanted to drop in and say that it's cool that you talk about it (as i'm sure you're aware, i was able to go through tumblr's entire dandy walker tag in five minutes). i appreciate the work you're doing and i hope you have a lovely day.

Hi! Thank you so much for this lovely message!

I was surprised that there were any posts at all when I first searched the tag if I'm being honest, so it's really nice to be able to talk to people like yourself!

When I set up this page I wasn't sure if anyone would reach out, so please feel free to drop by whenever you need to chat!

Hope your sister is doing well, I'll be thinking of you both x

[iamsomeonestrong]

September is Hydrocephalus Awareness Month.

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.

For more information, visit the Hydrocephalus Association

[brilliantlybeloved]

[roamwithahungryheart]

So we've had Lizzo using the s-slur in a song and then replacing it and apologizing. Now, right at the end of Disability Pride Month, Beyoncé releases a new track containing the s-slur. It's defended as it 'means something different in the US'. It takes her a few days to say she will remove and re-record the line. No apology. Nothing from the record company either.

It's 2022. You would think that in this, the age of inclusivity, people would be far more aware of these issues and be more mindful of the language they use. You would think that disabled voices have been given a better chance to be heard. A higher platform. But no. It takes social media to make the change instead of genuine consideration for our experiences from able-bodied artists and public figures.

The work never ends. Society will never be truly inclusive until we no longer have to fight to be a part of it.

[iamsomeonestrong]

Thank you to everyone who has reached out so far, I'm so grateful that you feel comfortable sharing your stories. I have hope that this little network will slowly grow into something great. All because of you.

Stay strong x

[iamsomeonestrong]

Seated yoga is helping those with disabilities get active and make connections

'At the moment 99% of the images you see representing yoga, are of hypermobile women contorting themselves into impossible shapes.'

[iamsomeonestrong]

Director Darla Rae planning follow-up documentary 'Fine and Dandy'

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:

Fine and Dandy Documentary Fundraiser

Donate online now to Fine and Dandy Documentary Fundraiser. Donations are fast, safe and secure.

[iamsomeonestrong]

Here's a link to Darla Rae's first film, 'Dandy Kids'

[iamsomeonestrong]

Director Darla Rae planning follow-up documentary 'Fine and Dandy'

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:

Fine and Dandy Documentary Fundraiser

Donate online now to Fine and Dandy Documentary Fundraiser. Donations are fast, safe and secure.

[iamsomeonestrong]

Update!

We're now working on a website & IG page, so stay tuned! x

[iamsomeonestrong]

The IG page is now live! x

[iamsomeonestrong]

Update!

We're now working on a website & IG page, so stay tuned! x

[iamsomeonestrong]

Useful links!

NORD has some useful links for information and networking with other families/young people/adults with DWS:

Dandy Walker Malformation - NORD (National Organization for Rare Disorders)

[iamsomeonestrong]

Friends, I regret to inform you that I may have to cut down on my caffeine consumption.

[iamsomeonestrong]

Life update!

Yesterday I had a surgery consultation. I had a bunch of pre-op tests and had my surgery explained. They're going to do a catheter valve replacement, and even though hearing the details caused me to be extremely anxious, I'm glad it isn't open-heart surgery for once!!!

All that's left now is to wait for their call. Should be approx a 2-3 month wait.

Stay strong & happy Disability Pride Month! 💪💖 x

[iamsomeonestrong]

Useful links!

NORD has some useful links for information and networking with other families/young people/adults with DWS:

Dandy Walker Malformation - NORD (National Organization for Rare Disorders)

[iamsomeonestrong]

Happy extra special Mother's Day to all the DWS Moms out there! You're superheroes!

[roamwithahungryheart]

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 hope to see you there. As always, thank you for your support x