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

PROSE device or Scleral Lenses 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.
If you are a parent of a child that has suffered SJS your child may be able to receive tutoring from your school. Your child may also be entitled to an IEP (Individual Education Plan). Know Your Rights: Students – Your Individual Education Plan As a parent you have the right to sit in on this plan and approve or change things. Your child may qualify for a low vision teacher, therapies and additional help at school.

The National Federation of the Blind. This is a good resource for those who suffer from permanent blindness. National Federation ofthe Blind, The American Foundation for the Blind

Home Page of the National Library Service for the Blind and Physically Handicapped

Specialists you may need to see: Pulmonologist, Ophthalmologist, Dermatologist, Internal Medicine, Gastrointestinal Specialist, Cornea Specialist

Other  Resources:

https://www.mediguard.org/

http://www.bravekids.org/

http://www.helpingyourchildren.com/National/non_profits.html

http://www.visionaware.org/section.aspx?FolderID=8&SectionID=121&TopicID=507

Patient assistance with medication for low income patients: Click here -  https://www.rxhope.com/

Alcon Care Patient Assistance Program

http://www.alcon.com/corporate-responsibility/patient-assistance-programs.aspx

Contact us

P.O. Box 350333
Westminster, CO 80035
Tel - (303) 635-1241
Fax - (303) 648-6686
Email - sjsupport@aol.com


The Stevens Johnson Syndrome Foundation (Julie Foundation for allergic drug reactions) is a non-profit organization. The purpose of the foundation is to provide the public and medical communities with information on adverse allergic drug reactions.

Our goal is to make the public aware of adverse reactions, so that a quick diagnosis may be made and the offending drug stopped as soon as possible.