Sisters with Multiple Sclerosis Share Their Scary Stevens-Johnson Syndrome Story In an Effort to Spread Awareness

An Unexpected Emergency

Kristin Hardy and her sister Margaret are no strangers to rare disease. Kristin has primary progressive multiple sclerosis (MS) and Margaret has relapsing-remitting multiple sclerosis. Margaret also has trigeminal neuralgia (TN), which is a rare neurological condition sometimes caused by MS. These siblings received their MS diagnosis the same year, 2002.

This is the story of how Margaret was diagnosed with yet another rare condition.

It all started with what Margaret thought were three mosquito bites. But soon she faced a yeast infection, then a sore throat, rash, and an incredibly quickly rising fever. She went with Kristin, who she was visiting at the time, to the local hospital. Thankfully, they were able to diagnose her there. They were met with a shocking diagnosis of what is called Stevens-Johnson syndrome, a condition that progresses quickly and has a high mortality rate.

Stevens-Johnson Syndrome

What exactly is Stevens-Johnson syndrome (SJS)?

SJS is a rare condition affecting the skin and mucous membranes. It can affect the lungs, eyes, nose, genitals, mouth, ears, and G.I. tract. SJS is caused when the body’s immune system is exposed to some agent (typically a medicine used to treat another condition) which causes it to go haywire. The immune system releases chemicals that trigger the death of cells. Patients develop a rash and blisters. When the blisters grow together and burst, patients can lose large amounts of skin. This makes them prone to infection. People with SJS require immediate hospitalization. Typically, patients are treated in the burn unit or the ICU.

SJS is essentially a severe side effect to certain drugs including Naprosyn, ascarbamazepine, carbamazepine acetaminophen, and ibuprofen. Carbamazepine happens to be the most commonly prescribed treatment for TN. Unfortunately, SJS is much more common in those taking carbamazepine than other medications. It’s estimated that out of every 10,000 people taking the drug, 6 will be diagnosed with SJS. 

That said, SJS is still extremely rare. You’re actually more likely to be struck by lightning than you are to be diagnosed with this syndrome.

Margaret’s Story

Margaret was quickly transferred to the Brigham and Women’s Hospital in Boston. Her care team included dermatologists, ophthalmologists, and gynecologists, in addition to her general medicine caretakers. While her case was pronounced “mild” she was in agonizing pain and required quick treatment. Thankfully, she had a good care team who was able to protect her from losing her vision by using tissue grafts.

Margaret stayed in the hospital almost a month.

What was the cause? Carbamazepine.

Margaret doesn’t take the medication regularly, only when her TN pain is the most severe. Unfortunately, this type of relief has now been taken away from her. She will never be able to use that medication, or any similar medication, ever again.

Thankfully, she has her life. It has now been one year since Margaret’s SJS diagnosis and although she is still not 100% herself, she is definitely on the upswing and doctors don’t believe she will have any long-lasting effects. Overall, she was actually very lucky.

Moral of The Story

Kristin, who shared Margaret’s SJS story, makes it clear that she doesn’t share it to scare people away from taking their medication. It’s simply about making sure you are educated on the signs and symptoms of SJS so you can take action quickly in the rare event this happens to you. She emphasizes that people need to understand that SJS doesn’t only happen the first time you take a medication. It could potentially occur on your 100th dose. But the good thing about SJS, is that early treatment significantly improves prognosis. Therefore, simply being educated on SJS could be life-saving.

Kristin encourages those reading this story to continue to spread the word about SJS, especially to their families and loved ones who may have a MS or TN diagnosis.

You can read more about Kristin and Margaret’s rare disease journey here.

Kristin Hardy is also currently working on her own website, full of tips for “hacking MS.” You can check it out here.

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