Welcome to   
 
  Stevens Johnson Syndrome Foundation  
   
        Make a Donation          
 Home   SJS Shop  SJS Fact Sheet   Contact Us 
 
  Navigation
 
  Support
 
  Awareness Events
 
  Medical Facilities
 
  For Medical Professionals
 
  Patient Resources
 
  Newsletters
 
  Media Center
 
  Global Resources
 
  


Click here
to support the SJS Foundation by purchasing SJS awareness products.

Official US Rare Disease Day Partner

Stop the Bullying of SJS/TEN Children

[Click here] for SJS free download.

 
SJS Patient Resources

  • DrugWatch.com is a comprehensive Web site database featuring extensive information about thousands of different medications and drugs currently on the market or previously available worldwide. DrugWatch.com includes up-to-date information about prescription and over-the-counter medications and includes details about associated side effects to aid in the protection of patients and consumers.

  • PALS would love to help out in any way that we can to help get those that suffer for SJS to receive the best possible medical care that they can. Please check out our website at www.palservices.org to see more about the FREE services we provide and the requirements for our flights. We primarily service the Northeast and down the East coast, but we do have the ability to link up with similar organizations for longer flights.

  • iGuard.org - iGuard Home | Drug Interaction Checker, Drug Side Effects, Medication Safety

  • Special Needs Children Medical Information Children with Chronic Life-Threatening Illnesses or Disabilities Resource [here]

  • Non-Profit Organizations Helping Children, Childrens Charities, Nonprofit Organizations for Children

  • Home Modifications for People Who are Blind or Have Low Vision.

  • Eyecare America
    This online resource of pharmaceutical assistance programs was created by EyeCare America, a public service foundation of the American Academy of Ophthalmology, for the use of physicians and their patients to help obtain ophthalmic drug assistance for patients in need. Medication Assistance

  • Medical ID Alert Bracelets and Necklaces. American Medical ID. [click here]

  • Leona Dorsey suffered from TEN in February 2005. She has written a book about Poetry and her experience and strength through her faith in God that helped her get through TEN. [click here]

  • The Dry Eye Remedy: The Complete Guide to Restoring the Health of Your Eyes (Paperback)

  • STEVENS JOHNSON SYNDROME: A BOOKLET FOR CHILDREN & THEIR FAMILIES
    Available through C & W Bookstore
    Click here: C&W Bookstore-Provincial Health Services Authority

  • The Partnership for Prescription Assistance [click here]
    The Partnership for Prescription Assistance offers a single point of access to more than 475 public and private patient assistance programs, including more than 150 programs offered by pharmaceutical companies

  • The NATIONAL PATIENT TRAVEL HELPLINE provides information about all forms of charitable, long-distance medical air transportation and provides referrals to all appropriate sources of help available in the national charitable medical air transportation network.
    [ Click here ] for Charitable medical air transportation resources.

  • Request an Angel Flight
    Do you or a family member need transportation to medical treatment? ? Are you a medical or social work professional and know someone who needs transportation to medical treatment?

    As our mission statement says, Angel Flight West arranges free air transportation on private aircraft in response to health care and other compelling human needs. Our volunteer members are private pilots who use their own aircraft.

  • CaringBridge.org provides free webpages to help families keep in touch and share updates on their loved ones condition during their hospitalization.


SJS what do I do now..?

You have just survived SJS/TEN and now the question what do I do now? Not everyone that has SJS will have side effects but for those that do this section is to help you find the help you may need. SJS can leave you with many side-effects. Such as permanent loss of nail beds, scarred pores, scarring and hyperpigmentation of the skin, visual impairment, dry eye syndrome, asthma, chronic fatigue, Swallow Disorder.

  • Many SJS Patients are unable to continue to work due to lingering side-effects. The sooner you contact Social Security and apply for disability the better. It can take many months to be approved. You may also need to contact Social Services to receive Medicaid. Many of these things can be applied for before you leave the hospital. Most hospitals have a patient advocate and social worker on staff.Social Security Administration Office of Disability - Disability Programs
  • If you have damage to your eyes you will need to follow up with a cornea specialist and or ophthalmologist. The Scleral Lens can help relieve pain from dry eye syndrome as well as protect your eyes from scratching lashes that can further damage the cornea. Boston Foundation for Sight AND Parkway Scleral Lens & Parkway EyeCare
  • If lid entropian is too bad you may require surgery. Oculoplastic surgeons are usually the most experienced to handle this procedure.
  • Specialists you may need to see: Pulmonologist, Ophthalmologist, Dermatologist, Internal Medicine, Gastrointestinal Specialist, Cornea Specialist
 
  How you can help?
 
  Prayers
 
  Top Stories
Story: 1)
 
Information for Donors: The Stevens Johnson Syndrome Foundation is a 501 (C) (3) tax-exempt corporation. All donations to the SJS Foundation are tax-deductible. [ Click here ] for Tax information.
© Copyright since 2001. All rights reserved. Contact Webmaster: Amit Khatri
Disclaimer | Privacy Policy