Tuesday, 28 February 2012

I have a rare disease, Jealous?

Welcome to the first Chiari Carnival celebrating Rare Disease Day.

Hello to any new readers.

Chiari is typically a birth defect that goes unnoticed for years or decades. When did you receive your diagnosis and how old were you?
I was diagnosed with Chiari on March 31st 2010 and I was 21 years old at the time at the time. I had been having symptoms for years but they all suddenly hit me then.

Many Chiari patients have been diagnosed with other conditions. Do you suffer from any other conditions besides Arnold Chiari Malformation? I have Pernicious Anaemia, scoliosis and High pressure.

Patients who have had decompression surgery are referred to as zipperheads. Are you a zipperhead and have you had any other Chiari related surgery? I became a zipperhead on July 29th 2011. This means rare disease day is my 7 month zipperversary I am currently awaiting surgery to fit a shunt, which should be very soon.

Western medicine focuses on medicine and medical procedures. However, many people benefit from 'alternative' therapies. What is your favorite non-medical/non-medicinal treatment for symptom relief? I have not tried too many things but I find massage helps with my back pain and heat helps with my neck pain.

Since Chiari affects the brain and nervous system some patients report symptoms which are difficult to describe. What is your most bizarre symptom? I don't think I really have an odd symptom. Mine are all pretty standard. One thing I do have is a VERY bad squint, one of the worst my eye doctors has seen. It isn't too odd, but is pretty extreme.

Dealing with pain and symptoms day after day can be very challenging and many state that their loved ones just don't understand. What would you like others to know about living with Chiari?
Remember that just because someone paints a smile on their face, it doesn't mean there is not pain hidden under the mask. I will often try and protect people I know by acting like I am fine, when really I am in bad pain. I am the typical British person, keeping a stiff upper lip, most of the time.

Attitude is plays a huge role in feeling healthy. What activities do you engage in to keep a positive attitude? I love to bake and sew. I also run a active chiari group on facebook, full of people who will drag me out of any dark place I fall into from time to time.

A great quote can remind us to keep the faith during those dark moments in life. Can you share a quote or saying that provides you with inspiration?
I love quotes, I have so many I could share. I will just find a few.
"I swim for brighter days,
Despite the absence of sun,
Choking on salt water,
I'm not giving in,
Swim- Jack's Mannequin

"Sometimes your circumstances suck, but life doesn't." Andrew McMahon

"Before I criticise someone I walk a mile in their shoes.
That way, if they get angry, they are a mile away and barefoot!"

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