Stevens-Johnson Syndrome (SJS) and its more severe form, Toxic Epidermal Necrolysis (TEN), are both rare allergic reactions to medications that can quickly turn fatal. For those that survive, the road to recovery can continue for years to come—and you may be left with long-term damage that is entirely disabling. If you've survived SJS or TEN, however, filing for Social Security disability benefits can be a little complicated. This is what you should know before you file your claim.
Focus on the long-term aspects of your condition.
Because Social Security's definition of disability requires your condition to either last for an entire year or end in death, you can't focus on SJS or TEN as your diagnosis. Those conditions are technically no longer your problem once their acute phases have passed. Instead, your disability is related to whatever problems you have going forward as a result of the SJS or TEN. There are a number of common long-term complications you may now be experiencing that should be listed as disabling conditions on your application:
- vision disorders, including chronic dry eyes, cataracts induced by the steroids that were used to treat SJS/TEN, or even blindness
- lung disorders, including scarred lungs that now require the use of oxygen or oxygen concentrators
- permanent neuropathic skin pain, due to nerve damage that was caused by your skin shedding over and over during the acute phase of your condition
- renal disorders that resulted from the fluid retention that can occur during the episode
- hypersensitivity to light (photophobia)
- disorders of the heart or lungs due to trauma, scarring, and secondary infections
- permanent scars or disfigurement that may affect you socially
- scar tissue on your hands that limits your fine motor skills
You cannot rely on Social Security's disability examiners to understand the specific long-term problems that you may be experiencing as a result of SJS/TEN without specifically telling them. Because every person has a unique case, you have to explain exactly how your condition affects you in as much detail as possible in order to have a strong case.
List any complicating factor as a separate condition.
Because the primary treatment for SJS/TEN includes high doses of steroids, you may also have developed additional medical conditions. For example, Cushing's Syndrome is a complication of heavy steroid exposure that can cause you to experience back pain, headaches, muscle weakness, and swelling in your legs. Even once the steroids are stopped, the condition can take years to resolve.
You may also be experiencing depression or anxiety as a result of what happened to you. Because of the severity of the situation, many people with SJS/TEN are treated in burn units—the intense pain, fear of dying, and the abrupt change to your entire life can easily result in emotional conditions that don't go away just because you've been released from the hospital.
Social Security will take all of these things into account when deciding your claim, but only if you tell them about each condition. Otherwise, they may not consider it. Keep in mind that you need to list all the medical or emotional problems that you've developed even if you think that something should be obvious.
Ask for assistance if you are having trouble getting approved.
If the SJS/TEN episode was fairly recent, it may be difficult to get approved—Social Security may want to wait until nearly the whole first year has passed to see if your condition is truly disabling. However, that's unfair to you, especially if some of your ongoing problems are clearly long-term conditions that your doctors don't believe will resolve within a year (or ever). If you're having trouble getting approved for benefits, consider discussing your case with an attorney who handles Social Security claims. He or she can help you get the right information and documents from your physicians to support your case and, hopefully, get you approved without a long struggle.