Why didn’t I know about Stevens Johnson Syndrome?

My post today comes on the heels of Mother’s Day, when we lovingly honored Moms – women who stop at nothing to take care of and protect their children.

One such mother I’m honored to know is my new hero – Helen Milne.

Helen is organizing a large fundraiser in order to send her 12 year old son, Ian Milne, to Boston for sight saving medical treatment and also to build awareness about his condition, Stevens Johnson Syndrome.

I got an email a couple of weeks ago from Helen asking me if I would donate an EasyLunchbox System as a Silent Auction item to support the Milne Stevens Johnson Syndrome Society in Victoria, B.C. Canada.

I’m a mom of three, and I’ve been reading parenting magazines, newspapers and magazines for as long as I can remember. I read A LOT. I also watch Oprah, Dr. Phil, and a lot of other news-type TV programs that bring awareness about a lot of topics to the general public.

Why hadn’t I heard of Stevens Johnson Syndrome?

I clicked on the link she included and started to learn all about SJS. I was shocked, saddened, and in awe of Helen, who has heroically taken care of Ian ever since he was afflicted with SJS .  At only three years old, Ian suffered the most severe form of Stevens Johnson Syndrome (SJS). 87% of his body blistered, burned and lost skin. Be warned, these pics are not for the faint of heart, but here are graphic photos of what SJS looks like.

He endured unimaginable pain and was treated as a severe burn victim. But the damage to his eyes was permanent. For 3 years, Ian was so sensitive to light that he lived in total darkness. For the past 8 years he has endured excruciating eye pain 24/7, requiring eye drops every 20 minutes and the fitting of a prosthetic lens for pain relief.

SJS is a potentially fatal adverse reaction to medications such as antibiotics, anti-convulsants, anti-depressants and anti-inflammatory drugs,  prescription and non prescription such as ibuprofen. Cocaine has recently been added to the list and there have been reported cases related to herbal supplements containing ginseng. In rare cases the syndrome can be caused by infection or cancer.  SJS patients have severe blistering of the skin and mucus membranes including the mouth, eyes and genitals. The skin loss and pain levels of SJS are equivalent to chemical or thermal burns and patients must be treated in a dedicated burn center. SJS affects all ages and races equally, and one of the biggest barriers to early diagnosis is lack of awareness even within the medical community. Over 90% of SJS reactions are initially misdiagnosed as chicken pox or hand, foot and mouth disease.

Annually, there are more than 100,000 outpatient visits for SJS in the USA, and about two million visits for reactions that may be due to drugs. Yet, like me, most people have never heard of SJS.

It is frustratingly obvious that education is the key. Prevention, early diagnosis, access to state-of-the-art treatment, and a strict reporting system for adverse reactions are vital. The public needs to know what to look for when taking any drug and seek medical attention immediately in the event of a reaction in order to prevent permanent damage.

Knowledge is Power

To learn more about Ian and SJS please visit www.milnesjs.com.  Please help Helen raise funds for Ian’s care and bring public awareness and research to adverse drug reactions that cause Stevens Johnson Syndrome. You could save a life simply by visiting their website and sharing the information with your family and friends!

Of course EasyLunchboxes.com will be supporting Helen, Ian, and the Milne Stevens Johnson Society in their awareness and fundraising efforts. I’m hoping that after reading about these very brave individuals, you will too.