#conquer chiari

[ded-i-am]

I suffer from this and this man made such a great, realist video about it. Thank you, good sir.

Anyway, I have strong feels about Chiari and chronic pain.

[simulator-kay]

It’s chiari awareness month and I’ve been lacking on all the posts I promised myself I’d upload. Never heard of chiari? Chances are, neither has your doctor. It is an incredibly rare neurological disease that has no cure, only painful and expensive surgeries that may or may not relieve the suffering. There’s an extensive list of symptoms that vary from patient to patient. Chiari malformation is like a box of chocolates, you never know what you’re going to get. - I often have migraines, more often than people realize. I don’t really mention them unless I rate the pain at a 7 or higher. - My limbs go numb easily, much like the sensation of your arm or leg falling asleep. This is a daily occurrence and often takes a couple hours to completely go away. - I’m easily exhausted. People who have a chronic illness are sometimes referred to as spoonies. The spoon theory is a metaphor for measuring energy. I only have so many spoons per day. If I use all of my spoons during work, I don’t have any spoons to get any of my chores at home done. This is often written off as laziness. - Continuous rash outbreaks (which is also a symptom of my bleeding disorder and nickel allergy, it’s hard to tell which is the cause at any given time). I’ve had the same two painful rashes on my hips/stomach for months. - I have severe back problems. A couple of summers ago, my back seized up and I had to call my mother, through hysterical tears, to pick me up from work because I couldn’t even drive. I was bed ridden for almost two weeks. From time to time, my back will still seize up and freeze my body for a moment before I can move again. Those are just a few symptoms I deal with on a regular basis, and they’ve gotten worse over the years. As a teenager, I told my mom I felt pretty lucky that my symptoms weren’t as bad as the stories I read about online. She reminded me that most symptoms reach their severity in the person’s early 20s. I was 22 when I started losing the feeling my limbs and noticed a significant decrease in my energy levels. — You can visit ConquerChiari.com for more information!

[nonfatalnerdisms]

I just wanted to share this because it’s super important. MS research is funded each year with over ten times the amount of money Conquer Chiari has been given to research Chiari since the organisation’s inception.

Chiari was first discovered in 1883, and yet we still know so little about it, and so few people know it even exists. It affects 1 in 400 people, so more people than MS does (about 1 in 600), and yet a study last year revealed only 158 medical publications in the US National Library of Medicine mention Chiari, compared to almost 4000 about MS.

I’ve been given a really amazing prize to raffle or auction off to raise money for Conquer Chiari, and I can’t talk a whole lot about it just yet, but I just want people to know exactly why this is so important. It would make so much of a difference to have enough money to fund as much research as necessary to really understand this condition.

[pathsthatleadhome]

A Favour to ask of the Chiari community

Hey everyone, I’ve got a favour to ask of anyone willing to do it.

I am setting up to do a raffle to raise money and awareness for Conquer Chiari. The top prize is a Lord of the Rings boxset worth $600 that’s been signed by a couple of the actors, and I’ve got runner up prizes of a series of art and film books donated by Weta.

I’m going to be running a crowdfunding campaign alongside the raffle to raise the money, and I’ll be having different tiers with perks to encourage people to donate more - at the moment these include things like thank you letters, postcards from LotR filming locations in New Zealand, and watercolour paintings by me. The more perks there are, the easier it will be to encourage people to donate even more - so I’m hoping that anyone out there who makes Chiari-related products (t-shirts, jewellery, keyrings, stickers, etc.) might be willing to donate some of their products to be used as perks.

I’d want to know the maximum amount of them you’d be willing to donate (for example, I’m planning on having 30 watercolour paintings available) and then you could either send them all at once to me to send out when the campaign is done, or I could pass on the names and addresses of the people who have chosen them to you to send them out individually yourself.

If anyone has any other suggestions for perks, please let me know. I want to raise as much money as possible with this. Thanks!

[ded-i-am]

So let me tell you a little bit about my "brain thing" I've mentioned in the past. I have a condition called Chiari Malformation, which is when a person's cerebellum extends into their spinal canal, where it doesn't belong. It causes a whooooole host of issues. I have Type 1, meaning I was born with it. I have had migraines since I was a child, as well as severe scoliosis (S curves in multiple directions, but they even out each other so it's really hard to tell), EDS (Ehler Danlos Syndrome), arthritis in my shoulders from years of my back trying to compensate for the curves, constant vertigo, lack of coordination, carpal(wrist) and ulnar (elbow) tunnel syndrome in both arms (have had surgery for one arm), Degenerative Discs (3 spinal surgeries), Cerebrospinal Fluid (CSF) leakage, and more. I'm basically a walking health problem.

Anyway, I'm bothering you all with this because I'm here to push my part in this year's

March to Conquer Chiari

The link above is to my personal fundraiser page for the event, you can also check out more about the foundation at their website or their Facebook page. I've set my goal at $1,000 but I'd really appreciate any donations at all. This is a rare condition that doesn't get nearly the funding it deserves and this group has given me so much support for the last 3 years (since my diagnosis), I appreciate you even reading my post this far. Even if you can't donate, I'm just happy to be spreading the awareness of this condition.

💜 Thank you for your time. 💜

[pathsthatleadhome]

And the winners have been chosen!

Check out the video of the draw. Congratulations to all the winners, and thank you to everyone who donated!

[pathsthatleadhome]

For anyone who wants more information about chiari and what Conquer Chiari are doing, the Conquer Chiari Research Centre have their own Youtube channel where you can see some of the work that they are doing.

This is the organisation that the money from this raffle is going to - the draw is taking place on April 20th.

[counterspin]

I feel really gross because I've been sending everyone I can find who knows someone or is someone with Chiari to the wrong website I was wrong It's conquerchiari dot com Not chiari dot org I repeat, I was wrong and the correct website for data on Chiari malformations is conquerchiari dot com I feel really bad about this