Former dancer lives moment to moment with rare genetic condition

I walk through the passage of time living “this” life housed in a body which for 59 years has partnered me in a dance of disease ...

By Debra McNie

I walk through the passage of time living “this” life housed in a body which for 59 years has partnered me in a dance of disease with beats of artistry.

The cloth of pain which sharply caresses my body has been with me since I took my first breath.

The journey of a life lived with pain and disease brings with it great responsibility to not squander life but rather honour what is and know without hesitation – only this moment counts. The next moment is opportunity to continue to move forward.

Without the desire to reach for one more moment I may give in to the demands of this ill body.

Moments guided by a clear understanding of the tenacious inner strength needed to define for me what my body will or will not become.

Otherwise I shall certainly parish and become that which my body keeps demanding I become. Diseased!

The fight is great. For hours I am controlled by intense pain matched only by overwhelming fatigue. Fatigue which insures I not leave the house for weeks. I continue to reach for the moment to pass and the next moment to arrive.

Opportunity and hope for me live in the moments of my life and belief the next moment will deliver a waterfall of moments to cleanse and heal this body.

The key to insuring I continue to unlock the door to enter the next moment lies within my beliefs, prayer, meditation, movement/dance, tenacity, hope, Bob, family, friends and community.  I know the strength sent by elders who have walked before me.

In 1992 I was diagnosed with a rare genetic blood disorder called C2 Deficiency.

I was born without the C2 gene which is one of nine factors in the Complimentary System.

These factors produce proteins and enzymes to fight bacterial or viral infections. Lacking the gene causes the inability to fight bacterial infections and manifests a chronic state of inflammation, pain and over all malaise and severe acute states similar to Lupus, the disease of 1,000 faces.

While staging Potato Dreams – an original play I created for The Potato House Sustainable Living Society, which had a successful run in the summer of 2012, I noticed a distinct switch in how I was feeling.

I traveled to Vancouver to see my immunologist and after testing it was discovered that due to C2 Deficiency another gene has been damaged and is not repairable. As a result my body is not producing antibodies.

The decision was made for me to have weekly infusions to put antibodies into my immune system for the very important support needed to fight bacterial infections.  Oct. 26, 2012 on my 59th birthday I started my first infusion.

Since then I have had great difficulties with the weekly infusions which I do at home.  Currently I am in a holding pattern until my immunologist and I can come up with a game plan.

My quality of life has been very poor. Many specialists with various credentials have told me they would never meet another person like me in their career.

The biggest challenge to this disease is one minute I can be fine, active, engaged and moving forward, and within minutes I am thrown into a flare up which for months can render me immobile and housebound.

During the good times I forge ahead and try my best to be a creative active member of society through involvement with the arts and volunteering my skills to the community.

Many people live with chronic or acute illness which is always accompanied by pain and fatigue.

If you have a loved one in your life living moment to moment due to illness, please give an offering of special moments to that person for it makes an amazing difference even if it is only for a moment.

Recently I discovered Feb. 28, 2013 was National Rare Disease Day.

Please visit http://www.rarediseaseday.org/country/ca/canada

It is my hope to connect with others who may have C2 Deficiency.

There is no cure and the only course is treating the symptoms which for me insures I look at modern medicine as well as holistic as both have offered relief.

 

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