Why I'm Walking to Raise Awareness and Funds for Chiari Malformation Research

When I got sick, the most frequent question I got asked was “What can we do to help?” I really never had much of an answer to that question until today. Until I had an answer to the mystery of my health issues, I could not tell them what I needed. So many of us struggle alone because we live without knowing what is wrong with us.

It took over a decade to find out what was really wrong with me. Nobody should ever have to live like that. I have hypermobile Ehlers-Danlos syndrome and Chiari malformation. Chiari malformation is when the bottom of my cerebellum (the cerebral tonsils) extends into the spinal canal. It can be very painful and causes a laundry list of symptoms.

Some of the symptoms those of us with Chiari deal with are:

– Migraines

– Neck pain

– Muscle weakness

– Problems with coordination,

– Stiff muscles

– Pins and needles sensations

– Reduced sensation of touch

– Sensitivity to light

– Blurred vision or double vision

– Difficulty swallowing

– Nausea

– Vertigo

– Tinnitus

Now there are many other symptoms that people with Chiari face and that is why we need more research! That is what the Chiari and Syringomyelia Foundation aims to do with the [email protected] Walks. The walk’s purpose is to raise money for research for Chiari malformation and related conditions. It is a series of one-mile walks around the country starting in June.

CSF unite@night walks logo

I am so happy to be a part of the walk in Virginia Beach, VA on the 26th of August at 4:00 p.m. If I can help bring answers to families who do not have answers, then there is a purpose to all the struggling. I must admit though, my children are very young and have started showing signs. That is a big reason some of us parents walk and raise money. Because some of the related disorders are genetic and if we can save our kids pain, then we would climb mountains.

Find out where your local walk is and lend your time and your support.  There may be someone you know who is struggling in silence with Chiari and related disorders and you may be the lifeline they need.

We want to hear your story. Become a Mighty contributor here.

Find this story helpful? Share it with someone you care about.

Related to Chiari Malformation

A water colored illustration of a woman.

When Your Chronic Illness Changes Your 'I Can' Into an 'I Can't'

Before I begin this article, I should give some back-story as to what my condition is and how it affects me. When I was 14 years old, I was diagnosed with Chiari malformation type 1, a herniation of the cerebellar tonsils down through the opening of the base of the skull (or foramen magnum). This can [...]
Young woman standing behind a blur of blue lights.

What It's Like Living With Chiari Malformation

Chiari malformation (CM) is a rare, mysterious illness and very hard to deal with. It’s hard finding a doctor who is knowledgeable and has experience treating it, hard finding information on what’s happening to your body and harder to explain to people when you don’t even know what’s happening. When I was diagnosed with CM [...]
abstract painting of a woman

To the 'Friends' My Chiari Malformation Left Behind

Chiari malformation, my new best friend. I had no idea you existed so I knew nothing about you. I guess you thought my body was lonely because before you came along, I had no headaches, dizziness, numbness and tingling, nerve pain, loss of balance, brain fog, loss of concentration, confusion with thoughts and words, body [...]
patient talking with doctor

The Blessing and Curse of Online Medical Information

The internet is an amazing source of information and knowledge. However, having all that medical knowledge at our dislocating fingertips can be a curse as much as a blessing. I have been able to learn so much about my rare illnesses from online medical journals, support groups and academic articles. I have hypermobile Ehlers-Danlos syndrome [...]