What do I do now

Qualifying For Social Security With Stevens-Johnson Syndrome

Stevens-Johnson Syndrome, or SJS, is a serious allergic reaction to drugs. Reactions will vary from person to person, but painful blisters from SJS can become life-threatening. If you or a loved one has SJS, a diagnosis alone will not qualify for disability benefits. Long-lasting complications from the reaction or your original underlying condition, however, may. The Social Security Administration (SSA) offers monthly financial support for people who are unable to work due to a serious disability. Here’s a little more information on how you may be able to qualify.

How Does the SSA Award Disability Benefits?

The SSA uses its own guideline of disability eligibility, known colloquially as the Blue Book, when determining if someone is eligible for disability benefits. To qualify for disability, your condition must either be listed in the Blue Book, or for those with a rare condition that’s not listed, your symptoms must “meet” the lister criteria of another condition.

means you cannot qualify with only a diagnosis. However, you may be eligible if you have long-term complications after you recover from SJS. For example, if SJS affects your vision, you may qualify if your vision is worse than 20/200. You can also qualify if you experience kidney failure.

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, awallow disorder, post traumatic stress (PTSD).

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

SJS is not listed in the Blue Book, so this means you cannot qualify with only a diagnosis. However, you may be eligible if you have long-term complications after you recover from SJS. For example, if SJS affects your vision, you may qualify if your vision is worse than 20/200. You can also qualify if you experience kidney failure.

Skin conditions are listed in the Blue Book, but most people with SJS will not qualify under these listings. This is because SJS lesions usually persist for 2-3 weeks, while someone with a skin disorder that’s eligible for disability will need to have severe lesions for more than three months.

Qualifying From a Pre-Existing Condition

If you don’t experience life-long complications after an SJS diagnosis, you may still be eligible for disability benefits depending on your health. SJS is prevalent in the HIV community. HIV is a qualifying condition for disability benefits, depending on the severity of the disease. It will typically qualify if you’ve been diagnosed with a form of cancer due to your HIV treatment, or if your CD4 blood cell count is below a specific threshold. If you have HIV and recently recovered from SJS, you should review the SSA’s Blue Book listing for HIV with your doctor to determine if you’re eligible for benefits.

How the Application Process Works

The easiest way to apply for disability benefits is online. If you’re unable to complete your application in a day, you can always save your progress on the SSA’s website to be completed another day. If you are applying on behalf of a child, you normally would fill out the application forms in person at your closes Social Security office. As of June 2020, Social Security offices are accepting online applications from all families.

If you’re applying on behalf of yourself, you should review the Adult Disability Starter Kit. Parents applying for a child should review the Child Disability Starter Kit. These online resources outline exactly what’s needed to successfully apply for disability.

SJS can be a life-altering disease. It’s far more than a simple allergic reaction. If you’re struggling to maintain employment after SJS, disability benefits may be able to help you and your family.

Sources Cited:

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, PTSD Therapist

Other  Resources:




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

Alcon Care Patient Assistance Program


Post Traumatic Stress



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