Meet Chiari Warrior – Celina
September is Chiari Awareness month. Each day, I am going to share one person’s journey…in their own words. Chiari malformation is a condition where your brain herniates below the base of your skull, compressing the brain stem and spine. The symptoms are unbearable, at best, and there is no cure…
Meet Celina...She explains why she walked in the Conquer Chiari Walk Across America
Chiari is a difficult word to read and pronounce for some people and it's also difficult to understand. There is so much about Chiari we do not know and too much we want to know. For me Chiari was not just a new word in my vocabulary but the word that changed my whole life and the life of my loved ones. Chiari is a journey I have not learned to live with yet. Chiari is unknowing, unpredictable, it changes from person to person and it is never the same story for everyone. It rarely comes alone. It brings different disorders like Ehlers Danlos Syndrom, POTS, Mast Cells, Tether Cord, Depression, Syringomyelia, Fatigue, Eagles Syndrome and many more.
For this and many other reasons is why I walk today.
I walk for a cure to conquer chair. There is no cure yet, and there are not a lot of doctors who know how to treat or even knows about it.
I walk for hope and for a better future where going to the doctors does't feel anymore like I did something wrong.
I walk so people can be more understanding and more compassion so when I use a handicap spot I do not have to be ashamed of it.
I walk not because I want you feel sorry for me, I just want you unsdestand why I can't do thing like others, why I cancel at the last minute and why I need support more than ever. This can be a very lonely illness alone. Symptoms come and go and another ones stay forever. I do not talk to much about it but unfurtunally its part of my every day life just like for you it's sleeping well, being pain free, walking, playing sports or going shopping.
I walk so I do not have to travel out of state for doctors app.
I walk so the people with Chiari don't have to go through what I went through, years without treatment and miss diagnosis.
I walk because I have seen the impact of awareness and the difference that a walk can make over the last 10 years. Lets not stop now our family and kids need us more than ever.
Chiari is a journey I did not choose, but for some reason I was forced to embrace. It is not my lack or faith, my negative attitude or something I did that has caused me to have Chiari. It is genetic malformation and there was nothing I could do about it. As a matter of fact I have immense faith and I am a very positive person and it's why I keep fighting this battle every day. Chiari has been taken so much from me and my family, but also has put in my path many wonderful humans that teach me every day about, hope, compassion, perseverance and love. I want to say thank you from the bottom of my heart for all the people such as everyone here today that walk dreaming the dream of some one else.