Handana and SJS. While neither of these terms may sound familiar, they are two you should definitely know. The first is a hand worn, high performance sports sweatband designed to solve a critical issue, the latter is the acronym for Stevens Johnson Syndrome, a severe adverse reaction to medication that can happen to anyone. So what’s their connection? It’s a Woman You Should Know named Katie Niemeyer.

This entrepreneur, wife, mother, runner, and nurse is the inventive creator of Handana and a brave SJS survivor on a mission to inspire perseverance and raise awareness of this deadly, yet little discussed condition.

Katie’s unbelievable journey began 25 years ago, when she was just 16 years old. After being on a new prescription medication for three weeks, she woke up with a sore throat and itchy eyes. Her pediatrician thought it could be an allergic reaction to the medicine, but ultimately she was misdiagnosed as having strep throat and sent home on an antibiotic.

Three days later, Katie ended up in the burn unit of Barnes Hospital in St. Louis after her skin, from head to toe, was ravaged by painful blisters to the point that she developed 2nd and 3rd degree burns. As her skin literally sloughed off, her body became one big, open wound easily susceptible to infection.

Katie at 16 in the Burn Unit with the affects of SJSThe diagnosis: Stevens Johnson Syndrome, brought on by the new medication she had been taking.

Katie remained in the burn unit for three weeks, wrapped like a mummy, suffering through daily dressing changes that caused the old blistered skin to tear off. She temporarily lost her sight and could not eat. Her parents were told their daughter would die.

But a miraculous combination of her age (not too young, but not too old, which helped her body fight), the excellent medical care she received and her own determined spirit saw Katie through this unthinkable ordeal without any major lasting effects from SJS, which for some can range from blindness and conditions requiring cornea transplants, to lung and kidney problems, joint issues, or even infertility. As badly as SJS affects the tissue on the outside of the body, it does the same to the internal organs.

Katie, a now 41 year old woman who continuously counts her blessings, shared with us, “I do not regret what happened to me. I am actually very thankful for it. Going through this at age 16 made me realize what is really important in life. It made me truly appreciate each day and be grateful for the little things in life.” Through her own experience, she is determined to raise awareness of SJS and bring hope to other families who are affected by it.

This is the same passion she puts behind Handana. What at its surface is a useful fitness accessory is also a very powerful reminder to persevere just like Katie did.

The Birth Of Handana

As an SJS survivor, Katie’s eyes are still very sensitive. In 2012, while she was training for her first marathon, she found it difficult to stay focused and motivated as sweat dripped into her eyes, burning them. Hats, headbands and sweatbands helped, but in the Texas heat, sweat still dripped causing extreme pain… a good excuse to stop her workouts. With the marathon a few months away, she needed a solution.

Handana in actionThat’s when Handana was born. Her idea was to create a high performance, fashionable sweatband for running and sports that wraps around your hand allowing you to use both sides to wipe and wick away sweat from your eyes, neck or forehead and nasal drip from your nose (c’mon we all get it).

Handana went from concept to market in six months while Katie was training for the marathon. She finished the race in 4:09, and said, “I could not have done it without my Handana. It not only served a purpose, but was a constant reminder of what I had overcome and that I had the strength to cross my finish line.”

Now available at retailers across North America, it has become her means of inspiring and empowering others to cross their own finish lines, no matter what they are.

Proudly designed and sewn in the USA, Handana is made of soft, durable, Supplex™ Lycra™ fabric. The reinvented sports sweatband is offered in over twenty colors and 5 sizes for women and men at any fitness level. It slips on like a glove with your thumb in the center hole, leaving your hand and fingers completely free so you can keep your stride smooth, steer your bike, change the tunes on your iPod or open your water bottle with ease.

As she continues to work tirelessly growing her Handana brand, Katie’s passion for her SJS awareness raising mission is equally as fervent. In speaking about her goals for the future, she said, “SJS is such an awful disease, but since it’s so rare, there is not a lot of research to find what exactly is causing it and if it is genetic, etc.” She added, “I would love to have the means to set up that research and help create a protocol when a patient is seen by a doctor or comes into the E.R. with possible SJS… kind of like you do when a patient comes in with chest pain. There is a protocol to rule out a heart attack.” The quicker a diagnosis of SJS can be made, the quicker the offending drug that is bringing it on can be stopped, so damage to the body is lessened and healing can begin.

It’s important to note that Katie, also a practicing nurse anesthetist, was inspired to pursue this noble profession because of her aunt (also a nurse) and the team of nurses (her “angels”), who took such excellent care of her in that burn unit over 20 years ago.

Katie is most certainly a Woman You Should Know and it is an honor for us to share her inspiring story and support her SJS awareness raising mission.

More About Stevens Johnson Syndrome

Stevens Johnson Syndrome (SJS), and TENS (Toxic Epidermal Necrolysis Syndrome) – another form of SJS – are severe adverse reactions to medication. Adverse drug reactions (ADR’s) account for approximately 150,000 deaths per year in the U.S. alone, making drug reactions the fourth leading cause of death in the United States. SJS is one of the most debilitating ADR’s recognized. It was first discovered in 1922 by pediatricians A.M. Stevens and F.C. Johnson after diagnosing a child with severe ocular and oral involvement to a drug reaction.

We were shocked to learn that almost any medication including over-the-counter drugs, such as Ibuprofen, can cause SJS. Most commonly implicated drugs are anti-convulsants, antibiotics (such as sulfa, penicillin and cephalosporin) and anti-inflammatory medications.

Although SJS afflicts people of all ages, a large amount of its victims are children. More female cases have been reported than male, however it does not discriminate against anyone.

For more information visit the Stevens Johnson Syndrome Foundation site.

Handana in action 2