Rare disease could come right from your medicine cabinet

KALAMAZOO, Mich.—A West Michigan family is sharing their story to raise awareness about a rare syndrome many don’t know too much about. They didn’t either when it blindsided their family.

A loved one was suffering from what they thought was flu-like symptoms from a bug bite, when sadly it turned out to be much worse.

The disease is called Stevens Johnson Syndrome or SJS. It’s an extremely rare disease that is most commonly caused by antibiotics like penicillin or Bactrim. It impacts less than 1 percent of the people who use them each year.

24-year-old Cassandra Campbell’s family says she got the disease from some medicine she was taking for a bug bite, which spread quickly and took over her body and eventually took her life.

“It was tough, it was tough. It’s the biggest fear I ever had was losing one of my children,” said Cindy Shoemaker, Cassie’s mother.

Cassie’s parents’ eyes filled with tears as they remembered their daughter’s life blossoming, and just as quickly it was taken away.

“There were a lot of people crying in the room that day,” said Tim Campbell, Cassie’s father.

Cassandra just had a baby on June 29, but only three weeks later she was gone from SJS.

“She was a brand new mom, and it was taken from her,” said Cindy.

Cassie’s professional life took off as she found not only a job but a new passion. She had just started a new profession, working side-by-side with her father.

“I was glad one of my kids wanted to pursue art,” said Tim.

She was learning to become a tattoo artist with her father, and her first sketch was a tattoo she designed for her mother.

“When I went back into my art studio, her sketch was still taped to my light table. It makes it really hard for me to go there right now,” said Tim.

Stevens Johnson disease is what took Cassie’s life, but it took days to diagnose.

“She had been bitten by a bug, we assumed. She was nursing at the time, so we got antibiotics, and they put her on two different ones,” said Cindy.

After that, Cassie went to the ER two different times in the next several days for flu like symptoms and a rash. A few days later, her mom got a disturbing call.

“I got a call from her boyfriend saying she couldn’t see. Her eyes were all matted shut, and she couldn’t walk on her feet,” said Cindy.

Cassandra was rushed to the hospital on July 13.

“It was a nightmare all of a sudden,” said Campbell.

The nightmare just began for Cassie. They diagnosed Cassandra with SJS on the 14th of July. Her rash got exceedingly worse. They admitted her into the Bronson Burn and Wound Center. Blisters covered her body, and even after they were scrubbed off, and wrapped it would come back.

“They actually didn’t know at first what was causing it, and they called doctors around the world,” said Cindy.

Cassie’s skin was essentially blistering, and falling off of her body. Doctors say once the disease starts, it’s treatable but not always curable. Even though the disease has been documented in literature for years, they are unsure what the singular ingredient in the medications is causing it. Essentially the tissue in her body was breaking down. In her final hours, doctors performed CPR on her three separate times.

“Then the doctors came up to me, and they just told me they were sorry and they couldn’t save her,” said Cindy.

All Cassie’s parents could think of at that moment was that they wish they would  have known that what they thought was just a rash was capable of taking daughter away from this earth.

Pharmacy doctors say the disease has little awareness because it’s so rare. The disease can affect everyone differently. It depends on genetics and what medication you are taking and for how long. It’s a case-by-case basis.

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53 comments

  • Carol

    The disease does NOT come from the medicine!!!!! I have SJS, and it almost killed me. If you are going to report on something do it right. It is a genetic defect that causes your body to suffer a sever allergic reaction to an impeding substance. It can happen with medication or certain viruses can trigger it. When the body detects the intruder it over heats and your mucus membranes start to react. It can cause anything from scars to drowning from fluid in your lungs to death. If you live you live in fear and with scars outside your body and on your organs. It is painful and sad and I wish this family the best as they try and over come their loss.

    • Anonymous Guest Doing Research

      A defect is not the only way to get the disease, it is ALSO caused from medications…I apologize for everything you have went through but with research you would know there are other causes

    • Christine Miller

      Carol, it can, and did in this case, occur from medication. I believe that Fox17 was focused on this case and this story so the omitted the fact is can occur from an infection as well. I’m sorry for what you went through but you are spreading untruths as well when you start a sentence saying “It does NOT come from medication”.

      • bleep

        You misinterpret what he means. You are born with the disease (due to some genetic mutation). The medicine only causes it to happen. So what the OP says is correct. The medicine doesn’t “give” you SJS. It only causes the SJS symptoms to show up. OP is asserting that Fox is misrepresenting what SJS is (fear mongering or yellow journalism or w/e). Fox says that medicine can give you SJS, when its completely not true. You are either born with it, or you aren’t. It would be similar to saying vaccines can give you autism, when you are either born with autism, or you aren’t. Yes, it is a small difference in the words used, but that small difference can have a large impact on the meaning of the statement.

    • Lee

      I know it almost took my life when I was 13. My primary care physician gave me a shot of penicillin and two days later I was in ICU. I was told I would never see again and might not make it. I feel for anyone who contracts the disease.

    • whitney wallace

      SJS/TENS sureley is caused by medications i wish i knew this family zertec caused mine when i was 12 now a survior at the age of 25 im all about spreading awareness and letting pwople know about thise desease it really ticks me off someone could get on here and say its not from medication maybe you should research it maam your compleatly inncorrect

    • K Maas

      Hi Carol, I am so sorry you have been thru ‘hell’ with this disease. Will you private message me on fb? I think I can direct you to something that will help you.

    • Lisa

      CAROL
      SJS is an allergic reactionto meds.IT IS NOT FROM genetics. My son had it and he had to have the treatment like a burn victum. He did almost die from it. More awareness needs to be out here about this. My husband and I had no idea what it was. I am so sorry for this family and wish them the best. His Aunt and i made a page on facebook for him and it is called Brandons Prayer Warriors. I will keep this family in my prayers and thoughts.

    • Steve

      All of you getting on carols case pay attention. There is a difference between a trigger and cause. While medication may trigger the devastating symptoms it is not the reason for the disease. The medicine didn’t cause the disease it was already there. Huge difference.

    • IAmASurvivor(Wisconsin)

      I suffered from SJS about a year ago. I was given Bactrim for a moderate UTI. I had almost finished all of the medication before I started to show symptoms. Started with flu-like symtoms, lead to hives. I am now 24 years old, I was in college at the time and It was the campus nurse practitioner who knew what i had and sent me immediately to the ER. I was 4 hours away from my family. I was very lucky, while i had blisters all over my body, even inside my mouth making me unable to eat or drink for 3 days, even water hurt. My doctors caught it early enough to where, yes my skin peeled badly, but not enough to where i needed a burn unit. My feet blistered to the point i had days i couldnt walk on them. Besides to use the bathroom [and that was when my feet where feeling well enough to do so], i didn’t get out of bet for a week. It took me another 2-3 weeks for my skin to recover. I did NOT have scarring on my skin or organs, thankfully. Carol- if YOU are going to report on something, you also need to do it right and actually do your research. but i do think it is funny where you first said “it does not come from the medication” then later stated “it can happen with medication or viruses.” Now i have done my research, and i have never read anything about a virus causing it, It is an allergic reaction. There is no one thing that causes it-it is a reaction to anything, food, medication etc… There is so much research to be done. I had a nurse who helped me and i was her first case and she had been a nurse for 30 years. Because of how rare it is, it is hard to learn everything about it. I had been given prednisone, benadryl, delauded, and imunuglobulen treatments. Those doctors saved my life. It was a long recovery, not just physically, but also emotionally. My heart aches for this family, and it also reminds me of how grateful of the fact i survived this and am able to share my story.

  • DocD

    Fox 17, please pass along Carol’s email to the World Health Organization. Apparently they need to contact her in the future as she appears to be an expert on this subject. ((((((((Sarcasm)))))))))) Shut up Carol, read and you might learn something someday……….

  • Julie Haller

    Definition
    By Mayo Clinic Staff
    Stevens-Johnson syndrome Stevens-Johnson syndrome
    Stevens-Johnson syndrome is a rare, serious disorder of your skin and mucous membranes. It’s usually a reaction to a medication or an infection. Often, Stevens-Johnson syndrome begins with flu-like symptoms, followed by a painful red or purplish rash that spreads and blisters. Then the top layer of the affected skin dies and sheds…………………………………http://www.mayoclinic.org/diseases-conditions/stevens-johnson-syndrome/basics/definition/con-20029623

  • Anonymous Guest Doing Research

    Stevens-Johnson syndrome is a rare and unpredictable reaction. Your doctor may not be able to identify its exact cause, but usually the condition is triggered by a medication or an infection.

    Medication and therapy causes

    Drugs that can cause Stevens-Johnson syndrome include:
    •Anti-gout medications, such as allopurinol
    •Pain relievers such as acetaminophen (Tylenol, others), ibuprofen (Advil, Motrin IB, others) and naproxen sodium (Aleve)
    •Medications to fight infection, such as penicillin
    •Medications to treat seizures or mental illness (anticonvulsants and antipsychotics)
    •Radiation therapy

    Infectious causes

    Infections that can cause Stevens-Johnson syndrome include:
    •Herpes (herpes simplex or herpes zoster)
    •Pneumonia
    •HIV
    •Hepatitis
    *****
    Factors that increase your risk of developing Stevens-Johnson syndrome include:
    •Viral infections. Your risk of Stevens-Johnson syndrome may be increased if you have an infection caused by a virus, such as herpes, viral pneumonia, HIV or hepatitis.
    •Weakened immune system. If you have a weakened immune system, you may have an increased risk of Stevens-Johnson syndrome. Your immune system can be affected by an organ transplant, HIV/AIDS and autoimmune diseases, such as lupus.
    •A history of Stevens-Johnson syndrome. If you’ve had a medication-related form of this condition, you are at risk of a recurrence if you use that drug again.
    •A family history of Stevens-Johnson syndrome. If an immediate family member has had Stevens-Johnson syndrome or a related condition called toxic epidermal necrolysis, you may be more susceptible to developing Stevens-Johnson syndrome too.
    •Having a certain gene. If you have a gene called HLA-B 1502, you have an increased risk of Stevens-Johnson syndrome, particularly if you take certain drugs for seizures or mental illness. Families of Chinese, Southeast Asian or Indian descent are more likely to carry this gene.

  • Anonymous Guest Doing Research

    Looks as though Carol is partially correct and so is Fox17…. Can be caused from both a defect or a medication!

  • Denessa Farrow

    My son nearly died last year….
    I’m still very confused as to how or why this happened….
    I feel so very sorry for any victims of this disease, and for the families who have to witness it.
    This truly is the worst thing ever…
    Regardless, of who thinks they know more, or are correct..I think we all share in our condolences to the family..
    can everyone please keep their opinions and negativity to themselves
    this is not a debate.

  • cindy

    I am an sms survivor. It started with bumps that looked like the chicken pox. I went to the DR and was given by IV and antibiotic and ibuprofen for my 104 fever. I was sent home and a day later the raw began by the time I went back to the DR I was covered in burns. I was fortunate. GOD in heaven was watching over me. I am left with scarring, thyroid problems, and mucus membranes issues (eyes). But I am alive to watch my children grow and spend sweet time with myhusband.

  • Leslie

    Why bad mouth anyone on here? We all have a freedom to contribute our own experience or thoughts. Don’t knock Carol she is right in her experience. I read all she had to say and I got what she ment and knew it could be multiple things and understood. I’m sure most of you did too but prefer to mince words. Its not about who is right its about awareness. So thanks to all who contribute to knowledge.

  • Rachel hood

    Sjs is a horrible disease. My husband had it and survived . we still fear a re occurrence to this day. So sorry for cassies family.

  • John Kozlowski

    I was just diagnosed with this yesterday. I was taking Bactrim for Cellulitis Infection. I broke out in hives a few days ago, stopped the meds, and was seen by PC. She knew what it was very quickly. Then first thing this morning I read this story and it really threw me back. I have MS, and yes my immune system has been compromised . I never heard of this till last night and googled it for more info. This poor young lady and her family. I have tears.

  • Teresa Jorgensen

    My Sister had this disease when she was a four yr old back in 1960. She was not takibg any type of antibiotics when she got it.The Dr. originally thought she had measles. But finally they figured out what it was and she survived it.

  • steve

    My prayers go out to the family and friends of Cassandra.

    I have had 4 confirmed cases of SJS. Two of those were the more severe Toxic Epidermal Necrolysis (TEN). Determining the exact cause can be extremely difficult. After my first episode of SJS, my Doctors thought they had isolated the cause. Unfortunately after eliminating the suspected medication and all similar medications, I had another occurrence about a year later. After an additional two episodes several doctors at Spectrum, and more than 2 dozen doctors at Mayo clinic in Rochester, MN still have not been able to definitively determine a cause.
    A small list of medications, specific viruses, and Graft complications are often thought to be causes. The disease is rare enough that it hasn’t been thoroughly studied yet. I can attest to this, I am currently being studied at mayo clinic due to my rare recurrences. My case also caught the attention of the Centers for Disease Control(CDC). Not all doctors agree on treatment protocol, or causes. Most doctors will never even see a case in their career, consequently, very few have enough understanding or education about the disease to appropriately recognize, diagnose, treat or counsel affected patients. I was misdiagnosed by numerous doctors during my first episode. After eliminating most other possibilities, one doctor mentioned a disease he had only heard about…SJS. After some diligent research he was finally able to diagnose me.

    Long story short: There is more unknown about this disease than is known. The opinions and science are evolving. Researchers don’t have large enough groups of patients to study, therefore research results about this disease are not especially reliable. Some information that was published only a few years ago may be outdated already.

    • Vicki

      Steve you sound just like my daughter. She has had SJS 5 times, each time the doctors give her steroids keep her a couple days and send her home. Thank God they slowed the process down but the doctors around here don’t seem to know where to send her to try and find what’s causing this.You said they found what your problem was, is there anything you could tell us that might help her. We honestly don’t know where to turn. SJS is very furstrating to understand. I know everytime she has this that it is causing more damage. Her last episode was just about 3 weeks ago, went to another hospital because the one she always went to didn’t seem to want to worry with her again. Now this hospital is trying a little more, gonna send her to a allergist. If anyone knows where to go for this please, anything would be greatly appreciated. Prayers for Cassandra family.

  • Vicki Schenkel, RN

    Stevens Johnson Syndrome is often referred to as Scalded Skin Syndrome, for your skin usually gets beet red and peels like a sunburn as soon as you touch it. I have seen it in Pediatric ER x 2 now and it is a very serious illness that in these 2 children was caused by an infection and the one child couldn’t be saved for the organs just shut down one after another…it is a rapid progression for a disease entity and whenever you see skin beet red and peels away like a sun burn, know that you are dealing with something very severe and seek immediate medical attention. I was a Pediatric ER/trauma RN for many years and only saw 2 cases, so it isn’t too common, but devastating.

    • footydoc

      Vicki,
      As a health care worker it is important that you do not help with the spread of misinformation:
      “Stevens Johnson Syndrome is often referred to as Scalded Skin Syndrome”
      SJS or TEN (toxic epidermal necrolysis) is DEFINITELY NOT Scalded skin syndrome with is caused by exotoxins from a S. aureus infection.
      “Staphylococcal scalded skin syndrome, (SSSS), also known as Pemphigus neonatorum or Ritter’s disease,[1] or Localized bullous impetigo is a dermatological condition caused by Staphylococcus aureus.”
      http://en.wikipedia.org/wiki/Scalded_skin_syndrome

  • Lauren Kowalczewski

    I’m so sorry for all the pain and agony that this family has gone through. I certainly hope that medical scientists are looking deeper into this. Carol and others, I’m so sorry for what you’ve gone through and wish you the best.
    People, can we not trash each other over petty things?!?! Just express sympathies and move on. There is absolutely NO reason to get upset or try to start something on this post.

  • Susie

    My son contacted SJS 11years ago when he was 9 from taking children’s Motrin.Thank God our family Dr had been taught about it in medical school and caught it in time before there was anymore damage to his skin or his eyesight. There is/was a Stevens Johnson’s foundation in Colorado that was very helpful to us..more awarness needs to be brought and taught about this disease…

  • Chelsea

    I don’t know much about the disease but I think carol was trying to say it is something that already exists in someone’s body that causes them to react that way to a medication, virus or whatever else. I’m not completely sure, but that’s the way I understood it.

  • bleep

    Medicine does not “give” you the disease. It does cause it though. And yes, there is a huge difference. Saying medicine can “give” you the disease doesn’t even make sense, based on the condition of how SJS works. Like all diseases, it is either caused by viruses/bacterial, or some genetic defect/mutation. SJS is just that, a genetic mutation that causes one to have a severely allergic reaction to certain medication. In other words, you are born with SJS, or you aren’t. Saying that medicine “gives” or “can give” SJS is a fallacy. The difference in words is clear, as these different implications can change a persons view point. If medicine can “give” SJS, everyone is screwed. But if the implications from this article, were instead, some people can have SJS, so be wary, then it would be different. This article doesn’t do that.

  • Melissa

    This article seems like it was written by a junior high kid, at best. It is poorly researched, disjointed and full of errors, both factual and grammatical. It’s shocking a major news organization is willing to run such drivel!

  • Marquita

    I’m a 40 year old African American single mom of 4, I too am a survivor of SJS, 2011 I had 1 year left of nursing school and became ill, after repeatedly going to emergency room and repeatedly being sent home, I spent more than 100 days in the hospital. No one ever told my mother the origin of the SJS but after losing skin, liver failure and 75 days in a coma, I’m still here! I’m disabled now, I’m still alive, my prayers go out to this family and any who has suffered with this illness

  • Sammie Kay

    While all these people are on here fight over what causes this I’m just here lost without you Cass 😭 til we met again beautiful

  • deborah hartsoe

    Lost my husband Tom 11 years ago to this horrible disease. I can`t even imagine the pain he endured in the 8 days he suffered. Survived lung cancer, cancer free for a year then had a brain tumor removed and was put on dilatin. First sign of a rash started on 2/14/03 and he died 2/22/03 after suffering horribly. Still miss him every day so I understand how this girls family feels.

  • Chandra

    Stevens johnson syndrome is an allegic reaction to sulfa in any medication…i should know because i have been diagnosed with it…my father is a PA and he knew what i had when other doctors didnt. It causes your skin layers to blister and die leaving open sores that leave you susceptible to infection. I wouldnt be here if it werent for my father. I now have grey patches where my skin had started dying.

  • tieka jones

    My grandfather had this disease and it was a medication that he was given that caused it my heart goes out to here family we know exactly how they felt I read this and it’s funny that this case happened in Michigan cause my grandfather lived in benton harbor michigan and this one in Kalamazoo which is 45 minutes away and this happened to my grandfather almost two years ago