I’m a survivor of Toxic Epidermal Necrolysis and it has changed my life forever. You read my story at the beginning of this book so you know what survivors of this horrible, horrible disease are faced with. What was presented to you preceding this chapter was pure medical fact. Here’s another fact: Doctors don’t honestly have the faintest clue how to handle EM / SJS/ TEN. They don’t know what causes it in the body and because of that, they can only treat the disease symptomatically.  In the preceding pages, I have presented theory that promotes that SJS / TEN can be caused by everything from ingested drugs, external stimuli, vaccines, and one theory suggests there may be a genetic predisposition.

This is a blatant warning that what follows is not medical fact, but rather a history of what I have learned by both experience, and seeking other SJS / TEN survivors out and hearing what they say.

The medical community does what it can to help us in an acute situation. Fact is that this disease is so infrequently seen, that physicians really don’t have a clue what to do. Sometimes, they end up doing what they think is correct in the short-term, but that can have long term ramifications for the survivors.

What follows is an honest and graphic synopsis that is based on my view. Keep that in mind while reading this.

What I’ve learned

       When I was in nursing school, I remember one lone paragraph devoted to Stevens – Johnson syndrome. I remember it being stressed that as a nurse, we may never see a case of it in our practice. When I was in EMT school, this topic simply wasn’t covered. Most health care professionals do their best – but don’t honestly know how to treat this. The last time I saw my current physician, he saw that I had the SJS rash breaking out again on my chest and his words to me were, “You’re a strange, strange bird.”

As I sit and write this, I’m recovering from surgery, and I don’t mind telling you that I was apprehensive about it. It’s proven clinically that when SJS / TEN returns full force a second time, the mortality rate is high. Right now; as this is written, I have the SJS rash on my torso, my face, and my arms. It’s never gone away completely. I’m saying this so you know what to expect from this illness. When I got sick, I had to hunt and search for information – any information – about SJS and TEN. It’s my hope that this book helps give you the knowledge on not only the disease process, but what you can expect after the initial sickness.

You can expect your eyes to bother you non-stop. In my eyes, on the lower eye-lid, the blisters have never completely gone away. The blisters group in small clumps and burn. My eyes water all the time. I have found that GenTeal Gel helps – just be sure to not touch the tip of the applicator to anything because the tip is sterile.

You can expect your lips and the inside of your mouth to bother you for months. It took my oral mucosa several months to heal. I couldn’t brush my teeth for almost two months due to blisters on my gums. Lidocane swish helps the pains until the blisters heal, and then you are faced with rather annoying mucosa strictures. You might as well resign yourself to the fact that your teeth will suffer damage.

You can expect chronic fatigue. It was explained to me that most of the fluid was literally sucked out of my internal organs during my initial sickness – and that’s most likely what’s causing it. It’s also likely to cause other major problems too, I recently had a survivor write me and tell me that she was just diagnosed with a very rare type of cancer on an internal organ; probably brought on by SJS / TEN. It’s my strong opinion that as survivors, we are going to experience health problems unforeseen. Be ready for it.

My blood work has until very recently been really screwed up. Since this happened to me, I go to an Internal Medicine Specialist as a family physician. He’s been watching me for everything from Lupus to Leukemia. There was as much wrong with the blood work as there was right. Be sure that your doctor does a CBC every few months to catch things before they get out of hand.

People don’t stop and think about the fact that in SJS / TEN, what happens on the outside also happens on the inside. My lips were blistered, my tongue was blistered, inside of my cheeks were blistered, my gums were blistered – all the way down my throat was blistered, my airway was blistered, my intestines were blistered, the inside of my nose and my sinuses were blistered. If you are a TEN survivor, this needs to be addresses. You need to watch for strictures in the throat that may develop from scar tissue. During the initial sickness, and for two months afterwards, I had to use Lidocane swish just to be able to drink. Since the inside of my intestines blistered, it killed the entire normal flora that lived there. Lactobacillus acidophilus (L. acidophilus) is the most commonly used probiotic or "friendly" bacteria that you can buy over the counter to replace the normal flora. Also, you need to pay attention to your potassium level because the lack of normal flora will cause chronic diarrhea. It’s taken almost a year now to get my electrolytes back where they should be.

Physical scarring I’ve found can be addressed with the use of Vitamin E. I took it orally for the first 6 months of my recovery as well as opened the capsule and rubbed it into my skin. I still have scars, but they are not as bad.

Finally, there is one issue that I must address that I’ve been dreading mentioning, because it not only may seal my fate, but yours as well. That is the issue of long-term ramifications that exhibit long after we are “healed”. In the research phase of this book, I have been in contact with many survivors. Common ramifications include various problems with eyes, photosensitivity, problems with tear ducts, and keratinizing of the inside of the eye lid. The latter causes cornea problems. Eye ball ulcers have been reported. Other long term ramifications that I have come across are scar tissue healing over the ear drum causing deafness, throat strictures requiring dilatation on a regular basis, malignant tumors that grow on internal organs and more. Skin problems include a thinning of the skin where blisters were and sensitivity to sunlight of the skin. Problems in the lungs include chronic bronchitis and COPD that survivors have reported. There also seems to be a link between SJS / TEN and Sjögren's ("SHOW-grins") syndrome.  Sjögren's syndrome is a chronic disease in which white blood cells attack the moisture-producing glands. The hallmark symptoms are dry eyes and dry mouth, but it is a systemic disease, affecting many organs and may cause fatigue. It is one of the most prevalent autoimmune disorders, striking as many as four million Americans. Some SJS / TEN survivors report Sjögren's syndrome as a long-term ramification.

In some cases like mine, although the SJS goes away, patches of EM remain chronic, usually in the torso regions and in the eyes. There have been reports that some survivors are now sensitized to other drugs as a result. Expect this and be ready for it, especially if you are facing surgery.

As stated before in this book, Stevens – Johnson syndrome and Toxic Epidermal Necrolysis affect people differently. Although the primary signs and symptoms are the same, the causative agents involved differ greatly as do the long-term ramifications. These ramifications include blindness, there have been cases of collapsed lungs reported; seizures have been reported, expect your fingernails and toenails to fall off; loss of hair has been reported, depigmentation of the skin has been reported and more.

What has not been mentioned is the need for counseling. There is an overwhelming sense of loss that accompanies this affliction that needs to be addressed. Life will be changed as you know it, and this issue needs to be addressed.

I hope with all my heart that this book has helped you understand and face this horrible affliction. It was a labor of love in the writing filled with hours of long, pain-staking and exacting research.

I am more than happy to educate future doctors and nurses about this horrible affliction. I am available to speak to your medical or nursing class. Please email me for availability. You may contact me by email at waboyer@waboyer.com or visit my website at http://www.waboyer.com