Thursday, June 7, 2012

Every Day Is a Gift

Contributed by C. McNamara Romanowski

My name is Constance. I am 51 years old. Seven years ago, I was diagnosed with Evans Syndrome.

There were signs that I had a problem with my immune system for many, many years, actually beginning around age 2 when I was first diagnosed with a severe allergy to penicillin.  Around age 7, I was diagnosed with eczema. At age 15 I was placed on birth control pills to control crazy menstrual cycles. At 29, it was Hashimoto’s thyroiditis. In my 30s, I developed numerous allergies to various medications, primarily sulfas. Also, I started having problems with unexplained pain throughout my body. Sometimes I wondered if I would see my 40th birthday.

When I made it to 40, I thought, “Wow, every day from here on out is a gift!”

On my 44th birthday, I was diagnosed with Evans Syndrome following a lengthy period of decline that culminated in a hospitalization.

Treatment  consisted of blood transfusions, IVIg, and finally rituximab. Not so very long after my last rituximab infusion, my blood counts skyrocketed to normal but then I started having trouble breathing.

On my 45th birthday I was diagnosed with massive pulmonary emboli in both lungs due to Factor V Leiden and a Lupus trait to hyper-coagulate. Once my Evans had been brought under control, it gave the hyper-coagulation tendencies in my body a chance to wreak havoc. My life was saved by a catheter into my lungs, injecting strong anti-coagulants directly into the clots.

Sometime during my 45th year, I was diagnosed with fibromyalgia, and then Lupus. I have been lucky, though. So far, Lupus doesn’t appear to have affected any of my organs.

Throughout this journey, I have sought information with regard to what’s happening to my body. In particular, it was difficult to find much information on Evans Syndrome. Because of that, my husband, William, and I decided to start a network of people who shared this diagnosis. The Evans Syndrome Community Network was born.

Speaking figuratively…We are from every continent; we are every race; we are every age; we are every sex. We are the Evans Syndrome Community, and we are united. We may be rare, but we are not alone. Together we will make a difference, standing shoulder to shoulder.

I have been asked, “Who are your heroes?” 

I really have to answer: "My heroes are my doctors and nurses and all of the other individuals who have participated in my healthcare. My heroes also are all of the moms and dads and grandparents and spouses out there who are caring for a person with Evans Syndrome. My heroes are those who have Evans Syndrome and fight every day to overcome its obstacles."

Today I am on blood thinners, and I am in remission from Evans Syndrome. Every day is indeed a gift…every breath, a joy.

Copyright © 2012 by Evans Syndrome Community Network. All rights reserved.