Surviving SJS

For those who survive SJS, there are serious and permanent complications:

• Stricture of the Esophagus
• Asthma or C.O.P.D.
• Chronic Fatigue
• Arthritis
• Environmental and Food Allergy
• Permanent Scarring of the Skin
• Difficulty with Regulating Body Temperature as the pores are scarred shut causing overheating
• Ocular Surface Disease and Dry Eye leading to blindness
• Cardiac Diseases such as Myocarditis

Without doubt the permanent damage to the eyes and supportive ocular tissue is the most medically challenging complication. Severe dry eye, scarring of the cornea and numerous other ocular surface diseases are common. Frequently the eyelids become permanently grafted onto the eyeball as the "burnt" inner eyelids heal, preventing movement of the eye or closure of the eyelids.

The formation of hard, scaly, scar tissue inside the eyelids induces intense friction on the eye, causing blood vessels to grow into the cornea. As the cornea becomes thinner, excruciating ulcers develop leaving permanent scar tissue. Loss of stem cells cause the cornea to become opaque, inflammation causes cataract and diseases of the conjunctiva are progressive. Blindness can be caused by any of these eye conditions individually, but collectively they are viewed by ophthalmologists as THE MOST TORTUOUS grouping of ocular conditions and survivors endure agonizing pain, seeking darkness and hiding from light of any kind.

To read Ian's story or for more information please visit

www.milnesjs.com


For quick updates follow our tweets

www.twitter.com/MilneSJS

What is SJS

Stevens Johnson Syndrome (SJS) and Toxic Epidermal Necrolysis (TEN) are potentially fatal adverse reactions 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 of causative agents 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. When the involvement of the body is greater than 30% the classification is changed to TEN which literally means “toxic skin death”. The blisters progress so that “sheets” of skin are lost from large areas of the body. Huge amounts of fluids and salts seep from the raw, exposed tissues. It’s important to emphasize that the loss of skin externally, referred to as sloughing, is matched internally by shedding of the lining of mucosal membranes such as the mouth, throat, lungs and gastrointestinal tract. Both stages of involvement are life threatening.

To read Ian's story or for more information please visit

www.milnesjs.com


For quick updates follow our tweets at

www.twitter.com/MilneSJS

About Us

Founded in April 2008, the Milne Stevens Johnson Society is a registered non-profit organization based in Victoria, B.C. Canada. Our mission is to help 11 year old Ian Milne to preserve his vision, by facilitating ongoing access to state of the art medical treatment. This will involve a stringent adherence to treatment schedules and recommended protocols, including bi-annual travel to specialists in the United States.

We recognize that knowledge is power, and as such, strive to build awareness and provide information or support to Stevens Johnson Syndrome patients and their families worldwide.

But we can't do it without a helping hand. We're a grass roots organization, so join us as we make our journey with Ian to happy, healthy eyes. If the past 8 years are anything to go by, we'll have highs, lows, obstacles and frustration (not to mention exhaustion). But be assured, that no matter how long it takes, there will be victory, clear vision and tears of joy!

For indepth information or to contact us, please visit

www.milnesjs.com

For quick updates follow our tweets

www.twitter.com/MilneSJS