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 Initiative 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 Initiative procured 181 million doses of the measles-rubella vaccine and vaccinated 211 million children against measles and rubella.

28 responses to “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.””

  1. Judith Maika says:

    You are an incredibly BRAVE Woman and I applaud your courage in the face of adversity you prevailed!!!! May God richly Bless you in all of your endeavors. Sincerely Judy

    • Kimberly says:

      Hello Judith,
      Kimberly here. Thank you for your kind words. I hope that by sharing I can inspire others and change the direction we are going in regarding vaccination and children’s health. Again, thank you for your kindness.

  2. Karen Logan says:

    I too, an a CRS survivor. I am blind in my left eye and wear a hearing aid in my right ear. I am 58 years old, and also have Type 2 diabetes and take insulin only, hypothyroidism, nystagmus, glaucoma , asthma and COPD, both of which are mild. The rubella happened so early for my mom, she did not know she was pregnant. This was interesting to read because I have not met any other person with CRS personally. I am a member of a Facebook group, perhaps the same one that Kimberly belongs to. Thank you for publishing her story.

  3. Liz Winfrey Ventura says:

    Thank you for sharing your story! I am behind you 100% in this fight to increase awareness in favor of vaccines! Best of luck to you!

  4. Danielle B says:

    Ms. Cowley, thank you for sharing the story of your struggle! I am finishing nursing school and was doing some research when I came across your story. I haven’t always felt that vaccines were good and necessary, but I am feeling so different these days and it is important for all parents and future parents to be educated about the risks involved with remaining unvaccinated. I plan to be more of an advocate for vaccinations in the future.

    I wish you all the best!
    Danielle

  5. Kimberly says:

    HI Danielle, Kimberly here. Thank you so very much for that! You have completely made my day! This is why I am doing this and I wish you a long and successful career in nursing. Best wishes, Kimberly

  6. Yunellia says:

    Hi Ms. Cowley. Thank you for sharing your story about your struggle living with crs. I’m Yunellia from Indonesia. I’m interested in crs because my son, nadhif, 7 years old, was born with crs. He has cataract at left eye, asd and ps, hearing loss, small head and liver problem. Now, he joins the special primary school for deaf.
    I’m very dissapointed because Rubella is still a problem in Indonesia . My country  doesn’t have national program for mmr vaccination. Many peope don’t know about rubella here. I try to educate my family and friends about rubella and the prevantion. My friends and I have facebook group “Rumah Ramah Rubella” to share and educate rubella.
    I hope I can have your book then.

  7. Matthew preston says:

    Hi I just wondered if you could answer a couple of questions for me about crs. My dad was born with this condition and it really effected him badly. He had eye problems thyroid problems and quite serious speech problems but he survived. I am just wondering if this could of been passed down to me? My eyes are fine but I’ve got quite a bad tremor and speech is very hard for me. It’s so annoying knowing my nan could of prevented this with a simple vaccination. Every day I feel like crying. But you are a credit and you should be very proud of yourself you wonderful wonderful woman

    • Niki Clark says:

      Hi Matthew. There is no genetic component to congenital rubella syndrome so even though your father has CRS, it would have no bearing on your existing health situation. Hope that helps!

  8. Jane says:

    Hi, I am in my 50s and have CRS, I am completely deaf in one ear and partially deaf in the other. Had heart surgery as a baby ( patent Ductus hole very large) therefore avoided heart issues growing up. Eyes are normal. I have started looking into my condition, as I feel my brain does not function in the standard norm. Have a slightly below average head size, nick name as a child ” pin head” No one has explained to me how CRS affects you during your lifetime . I was able to study at PhD level,( did not complete it) however I am unable to transfer skills into the working world and consequently have remained in low paid unskilled work, now work in a shop, this is in stark contrast to my academic abiIity. I find this very frustrating, I am now beginning to wonder if the CRS is behind my issues.
    Have you had similar experience or know of other people with CRS with the same issues

  9. Shelli Thomsen says:

    I contracted CRS at time of conception, as mother had some G.M. virus still in her system. Didn’t learn of this until in my forty’s. Moved with my partner to Farmington NM, can’t find people of my caliber to hang with. Home alone 365 days a year. Family doesn’t understand this illness. I tell people it’s MS, as they’ve heard of this. Dr., has listed MS on paperwork, as they also don’t understand illness. Just want friends to hang out with. Enjoy having drinks and trying to solve the world probes, lol.
    Unlike most CRS survivors, I’ve not had major birth defects other than mod-severe hearing impairment, lip reader.

  10. Quentin Erwin says:

    I am 51 years old and have lived with this condition. Have have not found much info on how this effect over time. I had developmental delays and coordination issues, and eye problems, no enamel on my teeth I have narrowing on the left side of my heart. I am seeking medical/clinical info on any possibility this could have effects in regards to any arthritis or bone condition that may manifest in older
    CRS people? I have read this story, And I have walked in your shoes
    it is nice to know that there are other out here

  11. Beverly Kirkwood says:

    Thanks for the great story, it helped me understand some things. My story is at the age of 16 I became pregnant with my son and remember waking up one morning with a rash and a low grade fever. It was on a Sunday so my Mother took me to the emergency room only to be misdiagnosed as having a food allergy. At the time I was 3 weeks pregnant and not for sure so did not inform my Mom. I married my Child’s father and we were excited to have a child. When my son was born he had a low birth weight 5.1oz and was covered in a red rash. It took the Doctor’s 5 days to find out what was wrong with him.He never developed an optic nerve, he had some hearing loss in both ears, his head was a little small and he was a little slow in learning. Even though he did not complain I know he was being bullied at school and in the neighborhood. My heart ached for my son. His dad kept him busy with football, basketball, karate and baseball. When he was an adult it was hard for him to work a real job because his mentality was that of a 14 or 15 year old, and his jobs had no way of knowing what the problem was, but thankfully his Uncle’s owned their own Business’s and kept him busy. But unfortunately my son started drinking and doing drugs and this went on for several years. I think some of this may have been low self esteem from all the bulling he had grew up with.On July 27th of 2015 my son passed away. He had been drinking fell out of the passenger side car door of his cousin’s car and hit his head, 7 hours later he suffered a stroke, which led to a brain bleed, he was in the ICU for 10 days and caught septicemia from a catheter and died from a blood infection. Through all of this I feel the most guilt for having a child so young, I loved my son with all my heart, but I feel that I failed him .

  12. Rosemary Moolman says:

    Hi, I am Rosemary Moolman from South Africa. I was born in 1963, am currently 53 years old. My mother had german measles while pregnant with me.I was born totally deaf in my left ear and partial hearing in my right ear. I was ear a hearing aid in my right ear. ENT’s say there is nothing that they can do for my left ear as it is nerve deafness. I wear glasses. The Eye Specialist said the the measles just passed my eyes. I do have a thyroid problem. I have also struggled with blood counts on my liver, but got them down with medication. I have had terrible headaches lately (the Dr called them cluster headaches). My left leg swells up from the calf down to my ankle and my feet get puffy sometimes. I have also had bladder problems lately and am going to hospital next week for Cystocopy and possibly an MRI. Hopefully that can get to bottom of my problems, but I seem to get the idea that most of them stem from the rubella.
    You are such a gutsy lady!

  13. Simran says:

    I have 3 month old baby boy and doctors said he has crs please help what to do

  14. Joseph Hammond says:

    I have a 4 year son who was born with CRS he has still not sat down or started crawling. He had surgery on both eyes for cataract removal but still lost the left eye through a viral attack. He has not started talking yet and gets hospitalised every now and then. My greatest worry is that of his inability to sit down, coordinate his movements.
    I am by this forum asking for advise, information and direction as where to get movement aids to enable him move about. He is almost always lying down but he is full of energy and I love him.
    I would be most grateful to any of you who have survived CRS to assist my son with anything that will make life a bit comfortable for my son. Even if it involves money I’ll bear it just to help my son. Kimberly I count on you and anybody who would assist in anyway. With my experience over these 4 years of my son’s life, I know that CRS is more than stressful for any person or family to handle without God’s special grace. To all the survivors, I say, God bless and restore your body fully. I don’t know how my wife got the virus but I know God is able to heal my son and he will do so…. God bless you all.

  15. Dorothy Harvey says:

    Just found your story today, please can you tell me what facebook page exists? I admire you greatly, I know how hard the struggle is, my daughter was born with CRS 33 years ago.
    She had a severe hearing loss, and some learning difficulties, but did amazingly well with hearing aids. Then suddenly in her 20’s her hearing just dropped drastically, she had sickness and balance difficulties. After various tests we were told that she was having ‘late manifestations’ of CRS, that the virus would keep re-activating and cause extra health issues, that eventually she would lose all of her hearing.
    We contacted the Sense organisation in England for information as our GP was clueless.
    My daughter has a range of allergies including most antibiotics and general medication; she has a lot of immune/auto immune system problems; digestive difficulties; has endolymphatic hydrops; and had bone disorders.
    She had Scoliosis which required surgery at 19, and had a Cochlear Implant 8 years ago.
    She has regular checks for eye disorders, diabetes, thyroid, kidney and liver problems.
    I have been desperate to speak to anyone with the same condition, or anyone who can give advice. My daughter works full time but has a lot of problems at work with the time off she has to take when the virus flares up. She is fed up with always having to deal with something and rarely feeling well. Although she has been lucky so far and has avoided the major complications with CRS.
    Our GP is willing to dish out medication which only makes things worse, we are now receiving help from a Homeopath.
    Thank you so much for your story, I wish you every happiness.

  16. Paula Collins says:

    Hi, my mother contracted rubella while pregnant with me back in 1965. I do not know which trimester that this happened. I am deaf in both ears. Up until recently, I thought that was the only problem I had. I am now diabetic and am now having severe relationship issues with my family. I am very very paranoid and extremely depressed. I sought mental help two years ago. It helped to a certain degree.

  17. Mary Adams says:

    I would like to understand more about CRS. My sons’ stepmother allegedly has this syndrome, but there are many inconsistencies in her story and I would like to know more. Firstly, she is a substance abuser. This involves alcohol, cigarettes, marijuana, and opiate pills. Over the last couple of years (she is 55) she has had worsening vision, signs of early dementia, severe neuropathy in her legs and feet (she is now walker dependent) arthritis, weakness, weight loss and frequent fractures. I am not convinced of her diagnosis, and would love your opinions! Thank you!

  18. Ellen Mason says:

    Hello,

    For a long time I wondered what was wrong with me. My mother was exposed to rubella when she was pregnant with me. Her doctor injected her with a live rubella virus. I was born death in my right ear and crossed eyes. My legs were turned in and I wore braces to straighten my legs and feet. I was always had an unsteady gait as a child and even now. I had stokes back in 2008 and everything went down hill from there. I lost my hearing in my left ear and vision in my left eye. I have hearing aides. I had difficulty speaking for a while however my speech has returned. I spent one year in physical therapy learning to walk again. I have always been sick. Stokes, Migranes, kidney issues, knee replacements, shoulder repair, thyroid issues, diabetes, Metabolic disorders, sleep Apnea, Rem disorders, restless leg syndrome, narcolepsy, asthma, gall bladder issues, lymph node infections, depression, anxiety, over active bladder etc. I was being followed for lupus. Then they thought I had leukemia. It just goes on and on. I take over 15 meds daily. I have had 9 surgeries and still need two more to get through. My arthritis is so severe I need another knee replacement. I suffer from stenious, degenerative disc disease, and scoliosis of my spine.The dr. wants to fuse my spine but I don’t want to do it. I am scared to say the least. Could all of these problems be from CRS? It is nice to know there other people out there like me. They seems to be no support like you have stated. Currently I am frustrated and broke. My medical bills are astronomical! I am a single mom with two sons. I have always worked but it gets harder and harder.
    Any ideas or suggestions? Also I would like to be apart of your facebook for CRS survivors.

  19. Laurie A. says:

    I just found your story, and I really appreciate it. I am now 60 and a CRS survivor. I am blind in my left eye with a cataract, no tear duct in my right eye, I cannot smell anything, have hearing loss in both ears, my hips are not completely shaped right (have low grade back pain because of it). And recently I just found out I’ve had one kidney that is half size all this time. I did (and still do) experience people asking why one eye is slightly smaller.
    I too am a promoter of vaccines. It’s so frustrating living in an area of the US that chooses to be ignorant of the damage they can cause others without them.

  20. Velma says:

    Hi, I just found this page. I was born in 1953 with CRS. I’m blind in my left eye, have type 2 diabetes that is very hard to control, had heat surgery at 5 for a reversed flow patent ductus, have a murmur they suspected was pulmonary stenosis. It also affected my kidneys, and was born with kidney defects. It also seems to have affected my immune system. I’ve had about 15 surgeries because of this. On the other hand, I’m alive, married and have two beautiful children. The people on here are the first ones I’ve heard of with it, tho I knew there were more. If you would, please make up a name for me. Thanks

  21. Dixie Depp says:

    Is there a continuous site for communicating with others?
    People tend to think you are a little crazy. I am 72 and there no vaccine at that time.

  22. Robert says:

    My wife is a CRS survivor born in 1952. She was born with hole in heart ,cataract and blind in one eye ,smaller head and feet turn inward.Her mother got GM in first trimester.
    She has problems with pulmonary, brain lesions, thyroid, hypertension, other auto immune problems , heart murmur and now kidney problems , at one time they thought it was MS ,but it is the CRS. She also had the early hormonal changes.And the curved spine from birth, the arthritis and bone pain is getting worse.She has severe hearing loss in both ears hearing aids help ,Raynauds phenomenon she gets a nice shade of blue and cold to the touch her electric blanked brings her back., Degenerative disk at an early age….chronic fatigue, she is a fighter. People should get the vaccine to avoid this way of life. It is nice to know that she is not alone as most doctors don’t think of CRS.sorry but we are not face book fans. Is there more sites to communicate with others.

  23. Keith scovell says:

    I too am a CRS baby from developing in the womb
    I have always been deaf and suffer with brittle bones.
    I often wondered if there were others with the same
    I am due to hit the big 50 th birthday soon and you do wonder what the future holds.
    Lovely to read others story’s and challenges

  24. Evette says:

    Hello.
    I have CRS. I’m 47.Blind in one eye. Hearing impaired.
    Pulmonary Stenosis. Hypertension. Hypothyroidism.
    Anemic. Etc…It’s so interesting knowing others
    Who have this”rare” disease. I belong to a facebook group
    Of survivors if CRS. I don’t think it’s as rare as people
    Make it out to be. Have a great day!😁

  25. Peter Earl Frandsen says:

    I am a 51 year old person born when my natural mother had rubella, and have no sight, but do hear, but have cognition process and auditory touch and other sensory process impairments, and have problems with book work and rote learning, navigation and wayfinding, Braille reading, And learn by association cross reference, and rhymes and other similar learn and menus based foremating, and sensory motor and multi sensory learning, need a lot of stimulation, get burned out with routines, and slow work, and life stresses, slow being on time, have high blood pressure and sleep and other digestive and other issues as well as turned out feet, and some executive and learning processing and speed issues and clumsy keyboardingand other process impairments, and am wanting to know how to advocate and make others aware of my needs and find resources and supports needed for me, and not have the lack of understanding I am now having even in the blind groups, and not just the institutions, but.the groups and consumer associations and groups as well and to know what to do now and hope to hear other similar stories of people with out sight but can hear, but have cognition memory and concentration and focus and learning issues and impairments and hope to hear more and. Thanks for now

  26. Diana says:

    I was born with CRS. I cannot see out of one eye and have limited vision in the other. I have gone to college and have a MS. I have memory issues, depression, anxiety, lesions on my brain and degenerative disks in my back. I am relatively healthy so am thankful to be still kicking at 55. I have a great job, three healthy kids, and a lovely husband. I wonder how this will affect me as I age, especially mentally. I am already developing hearing loss and have glaucoma. My vision has decreased more. It is beyond me why people won’t vaccinate their children.

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