What does a juvenile disability look like? Some might envision a homeschooled child or perhaps a wheelchair user. What if a child outwardly appeared normal yet their insides were screaming in agony? Try to imagine a child who’s never known a life without horrendous pain and suffering.
That is the case for 11-year-old Chloe Louise Kuschert of Corowa, a town in the New South Wales in Australia. She oftentimes cries to her mother, “Why me? Why can’t I have a normal life? I hate this so much.” But all her mother can do is comfort her and wipe away the tears streaming down her face.
Chloe was just two years old when her health began rapidly deteriorating. It started with a sensitive area that some people wouldn’t feel comfortable talking about. Debilitating symptoms of bleeding, swelling, redness and pain developed in her vulva (female external genitals) area. As her condition progressed, the burning became so excruciating that Chloe could no longer function. Her life became overshadowed by throbbing pain and discomfort. After visiting numerous doctors over a 4-year period in Australia, doctors were still unable to diagnose Chloe’s condition. The doctors decided to have Chloe’s medical chart reviewed by a pediatric group based out of the United States where a genetic specialist finally made the diagnosis.
Chloe had a rare disease called Erythromelalgia (EM) which not only affects her vulva area, but also her face, ears, and hands. The condition affects 1.3 in 100,000 people, and there is no cure.
EM causes unbearable burning pain, noticeable redness of the skin, swelling, and increased skin temperature. The exact underlying cause of EM is unknown. It’s thought to result from vasomotor abnormalities or dysfunction in the normal constriction and dilation of the caliber of certain blood vessels, leading to abnormalities of blood flow to the extremities.
There isn’t a typical treatment for EM, and sometimes nothing helps. Chloe has tried many prescriptions and supplements, and dealt with dreadful side effects. She is on a strict ‘cooling’ regime to prevent overheating.
EM flares on Chloe’s face and ears
“Managing her EM pain is incredibly difficult,” said her mother, Jacqui. She went on to say that every day is a battle in which Chloe fights for her joy and freedom from pain. Since the condition also affects her private area there is no way of knowing the impact it will have on adulthood with sexual activity and childbirth.
Chloe’s health continued to worsen over the next several months after her EM diagnosis. She began experiencing vaginal bleeding, frequent toilet needs, urinary incontinence and burning along with bladder and stomach pain. After seeing several doctors, going through more examinations and cystoscopies, a gynecologist diagnosed Chloe with interstitial cystitis (IC), a condition that results in recurring discomfort or pain in the bladder and the surrounding pelvic region.
“I felt helpless as I just sat there crying. I wanted to take all of her pain away,” Jacqui said.
Chloe has been repeatedly tested for everything you could possibly imagine and still no doctor can provide answers.
Just a few months following the EM and IC diagnoses, Chloe developed more unbearable symptoms. Her joints began aching and swelling, and she bruised more easily. She had trouble walking due to the pain in her knees and ankles. Ultimately a rheumatologist diagnosed Chloe with Ehlers-Danlos Syndrome (EDS), a group of inherited disorders marked by extremely loose joints, very stretchy skin that bruises easily, and easily damaged blood vessels. EDS affects about 1 in 5,000 people globally.
Most parents couldn’t fathom their child dealing with one rare disease let alone two. The effects of having all three conditions has caused Chloe to have fainting spells, abdomen pain almost daily, dizziness, and low blood pressure.
“To manage her many combined symptoms Chloe regularly sees a local general practitioner, pediatrician, gynecologist, neurologist, and a cardiologist. Currently she’s taking 11 pills a day plus a pain reliever in an effort to give her a somewhat normal life. Of all her conditions, EM is the most painful for Chloe,” her mother said.
Chloe is in the fifth grade. She battles through the pain most days because she loves attending school. Her teacher is very kind to her, and her classmates are supportive and understanding. She’s sad to miss school days when she’s overwhelmed by pain.
An emotional Chloe as she struggles with daily pain
EM causes the body to quickly overheat during physical activity so Chloe is unable to participate in any outdoor sports. Although it’s disappointing, Chloe maintains a positive attitude. Instead she enjoys reading and doing arts and crafts.
Chloe enjoys spending time with her family — mother, Jacqui, father, David, and brothers, James, 18, and Caleb, 14. She also loves hanging out with her dog, Molly, and her rabbit, Gizmo.
Chloe with her brothers, James and Caleb
“The unknown is scary. I don’t know if my daughter will ever live a normal life, free from pain and misery. I want her to be happy, and not just have ‘happy moments.’ This is all very devastating. I also have to accept that she may never experience the gift of pregnancy. I’m heartbroken inside,” her mother said.
Disabilities aren’t always recognizable to the public. So when you see a child who seems carefree and happy, please think of Chloe. There are children out there like her whose lives are a lot harder than they appear to the outside world.
If you’d like to support Chloe Kuschert, you can do so by helping spread awareness. Please Like and Share her Facebook page titled Chloe’s Hope: Stop the Burning
Chloe and her mother, Jacqui
To see this story on The Huffington Post:
To read more about Erythromelalgia, please see the following blog:
Jacqui and Chloe are active members of the “Parents of Little EM Warriors” program where they communicate and share their experiences with other families in need of support. Join “Erythromelalgia Warriors” on Facebook to learn more.
Chloe has also joined the “I Am The Face of Erythromelalgia” campaign.
EM Awareness Video: