Living with Congenital Rubella Syndrome: “You get used to being stared at. I just smile. I like who I am and how far I have come.”

This is the second in a two part series on Kimberly Cowley, a 50+year survivor of Congenital Rubella Syndrome (CRS). Kim reached out to the Measles & Rubella Partnership with to tell her story. A fierce advocate for vaccinations, Kim wants others to realize the burden CRS, an easily vaccine-preventable disease, places on those infected and their families. If I can save just one life, by telling, teaching and pushing for vaccination, she said, then I know it’s all been worth it.

To read the first part of this series, click here.

Things became much worse, emotionally, for eleven year-old Kimberly when she was scheduled to have heart surgery. Children can be cruel to those who are vulnerable. Her classmates taunted her, telling her she was going to die. She would miss a month of school.

“Being in hospital for such a long time changed me,” she said. “Watching other kids die and parents crying with anguish changed me. Knowing it could happen to me, I tried not to think about it. I prepared for this surgery like a fight I wasn’t prepared to lose.”

One parent was allowed to go into the operating room with Kimberly while anesthesia was being administered but neither of her parents chose to provide this comfort. She went in alone.

During the long surgery, her ribcage was opened and her heart was stopped in order to repair the hole in it. When she woke up, she smiled despite the incredible pain, knowing she was alive, proving her schoolmates and the unfeeling world around her, wrong. Her surgeon called her a willful, stubborn, survivor.

At age 50, Kimberly has learned to embrace the scar that runs the entire length of her breastbone, but in her teens and 20s she hated it. People stared, they asked questions, reminding her of a particular episode in her young life that she dearly wanted to forget.

These days, Kimberly lives quietly. She has worked in the past, but seldom full time. And although having children can be dangerous for people with CRS, she has a healthy 26 year old son, characterizing him as “the best risk I’ve ever taken.”

She exercises daily or risks losing her mobility and is a passionate archer. When she ventures out of her home, it’s an exercise in extreme concentration. Kimberly uses a long cane to help her get around. Without it, walking is like traveling in a mine field. Her life is also about tools. Her laptop has magnification, her Kindle reader is on the second largest font and she paints her nails with a magnifying glass clipped to her glasses.

“You get used to being stared at,” Kimberly said. “The only difference between now and when I was a child, is that now I don’t care. I just smile. I like who I am and how far I have come.

Kimberly is currently writing a book about her life. She doesn’t know many people living with her syndrome, although she does belong to a Facebook group of CRS survivors and their families. There are very few support groups anywhere for those with CRS – something she wants to change.

“I’m looking forward to the next adventures in my life,” she said. “I’m a vaccination crusader. If I can save just one life, by telling, teaching and pushing for vaccination, then I know it’s all been worth it.”

“There are some things in life you can’t prevent and some you can’t see coming, but with CRS you can and rubella can be stopped. Don’t depend on others to be vaccinated. Herd immunity only works at 95% vaccination levels. Anything less than that and you are putting your child and others at risk. I want this problem gone in my life time and I am a stubborn woman.”

To contact Cowley or learn more about her upcoming book on living with CRS, Sapphire Heart, visit HERE.

About Rubella and Congenital Rubella Syndrome

Rubella is generally a mild disease but can have serious consequences for pregnant women and their children. If infected with rubella in the first trimester of pregnancy, women have a very high risk of giving birth to a child with Congenital Rubella Syndrome (CRS). CRS often results in multiple birth defects including heart problems, deafness and blindness. More than 100,000 children around the world are born with CRS each year. The lifelong complications and disabilities have an immeasurable emotional, social and financial cost for families. Like measles, rubella can be prevented with a safe, effective and inexpensive vaccine. This can be delivered as a rubella vaccine alone, or combined with measles vaccine (MR) or with measles and mumps vaccines (MMR).

In 2013, the Measles & Rubella Partnership procured 181 million doses of the measles-rubella vaccine and vaccinated 211 million children against measles and rubella.

Prelude Prelude Version 2.3.2