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Stevens johnson syndrome foundation online newsletter

Stevens Johnson Syndrome Foundation OnLine Newsletter Stevens Johnson Syndrome
Foundation
Newsletter
September 17, 2004
Our Prayers To:
SJS Foundation Board of Director Leroy Calvert, from Glenhead, Long Island, diagnosed with bladder and liver
cancer. Our love and support are with him and his family at this difficult time.
Dr. Stephen Byrnes suffered a stroke on June 10, 2004, and passed away on Thursday, June 17th, 2004. Dr.
Brynes authored the article "Fatal Reaction, the Horror of Stevens Johnson Syndrome." He was the first
person to have an article published about the SJS Foundation. We will greatly miss him. Our thoughts and
prayers go out to his family.
My SJS Experience, by Don Smith
Miracles Do Happen, by, Katie Pennell
October 13, 2003, I underwent a tonsillectomy and
May 1995, I had been suffering from Interstitial biopsies in other areas on the left side of my throat, Cystitis and reoccurring yeast infections. I went to due to a lump that was found by my primary care my urologist to see about the IC. I happened to physician. It was diagnosed as cancer and surgery mention to him that I thought the yeast infections was performed to remove the infected lymph nodes were making the IC worse. He told me that we and some muscle on the left side of my neck, on would take care of the yeast first and then tackle October 27. On December 8, I started radiation the IC. He put me on a 28 day---100mg a day dose of Diflucan. Diflucan is a by-mouth yeast infection drug. (Come to find out later, I should have been On January 21, I went for my thirtieth of thirty-three
given 1 - 150 mg. pill!) I took Diflucan, 15 pills, over radiation treatments, but the doctor told me that I 18 days. Below is the account of what happened needed to check into the hospital, instead. She took me to the Emergency Room, to be admitted and they took vital signs. Suddenly, I was put on This summer was the “summer lost.” On Saturday, oxygen and told that I had to be sent to another June 10, I attended one of my daughter’s softball local hospital, because they weren't equipped to games. I got a little sunburn. I decided to color my hair that evening. On Monday, June 12, I woke up with my eyes crusted shut and blisters on my sun On the fifteen minute ambulance ride, I tried to get
burnt neck and on my right arm. I went to (my the paramedic to have the driver turn on the lights allergist). He took me off Diflucan, a medication I and siren, to make the ride more exciting, but she had been taking for a yeast infection. On Tuesday, wouldn't do it. At the same time, my girlfriend, June 13, I woke up with my mouth covered in Heather, and my primary care doctor were being blisters. I felt it would go into my throat, so my called and told that I probably wouldn't live through husband took me to the ER at our local hospital. I http://www.sjsupport.org/newsletter/2004/september/pdfnletter.html Stevens Johnson Syndrome Foundation OnLine Newsletter called and told that I probably wouldn't live through husband took me to the ER at our local hospital. I was given two shots and sent home. On Wednesday, June 14, I was no better and I recall being taken into my room and IV's started.
continuing to get worse. Mom took me to (the The next thing I was aware of was that, when I woke allergist) again. He gave me several things and up, I was very weak and I was taken for a bath and Nizoral. Nizoral is in the same family as Diflucan. dressing change. For the next couple of days, I By Saturday night I was miserable. The blisters wondered why everyone kept saying, "You look were so hot that some on my back even burst. I great," whenever they saw me. There was a mirror called (the allergist.) Took him away from a concert. in the room and I saw some of the damage that had (He was not happy!) Told to stop taking Nizoral- been done to my skin from my face to my legs, by Steven-Johnson Syndrome. I didn't look great, at morning, I was about 50% covered in blisters on my all. When one of the doctors mentioned how much legs, arms, and back. These blisters were sizes better I looked than when he had seen me nine from a dime to a dollar and filled with fluid. I actually days before. I remind him that I'd only been there sloshed when I walked. Went to see (allergist) on less than a week. When I mentioned this to Monday, June 19th. Cried. He said I should see an Heather, she told me that this was my second infectious disease doctor. He asked me what he week in the hospital. Even now, I have no memory could do for me. I lost it. Please put me in the of the first week, whatsoever. The nurses said it hospital. I went in around 4 p.m. We called my was due to some of the medications I'd been given, sister and told her what was happening. She took the first flight out of Greenville/Spartanburg and arrived around 8 p.m. No orders given. Tried IV six I was in the hospital for fifteen days and was
times. ER doctor got one in my left arm. Had to discharged only because Heather, who lives over have an arm board to keep it still. 11 p.m., still no three hundred miles away. had arranged to stay in orders. Nurse calls new doctors answering service. Grand Rapids to take care of me, for the first two The doctor on call gives orders. By Tuesday, June weeks. Arrangements had been made to have the 20, I was 75-80% covered in blisters. They were on food for my feeding tube, the pump and other my arms, legs, feet, hands, neck, back, hair, face, supplies delivered the evening that I came home. mouth, and private areas. Because I was very The nurse instructed Heather in handling all of that dehydrated and required antibiotics, morphine and because I wasn't alert enough to follow her other medications, a wonderful doctor put in a instructions.or to do it, at that time. Heather took central line. What a neat person. Very caring. I was very good care of me during the time she was here later told that if I had waited one more day to enter and made sure I understood how to handle the hospital, I would have been dead. The central everything before she left. I didn't realize how much line was easier to deal with. I have vague memories help she'd actually been, until I had to do everything of the first week. I remember that my feet swelled for myself. It wasn't until that two weeks that so bad that I could not walk. They put a portable Heather was with me, that I understood everything toilet next to me so I wouldn't have to go far to go to I'd gone through. She told me of the phone call from the bathroom. My day looked something like this: the doctor, and how she'd called the Burn Center Wake up, after being awakened several times during before I even arrived. I was most impressed with the night to be checked, get a warm washcloth from their treatment of Heather because she had called my sister or my husband. Use one warm washcloth every hour on the hour, during that first night and to open my crusted eyes. Even with my eyes open, day and they, in her words, were, "Wonderful with my vision was so blurry that I couldn't see well. We tried eye drops, but they only helped a little bit. Get another warm washcloth and use it to open my After the first couple of hours, they told her that
crusted mouth. Try to eat something. Finally I there was no reason for her to rush over, so she convinced them that I really couldn't eat. They put could take care of obligations at home, before another bottle of stuff on my IV pole and told me it coming to Michigan. Whenever she called, if they was food. At least I didn't have to try to eat hadn't seen me recently, they'd check on me, and anymore! I was to have twice-daily whirlpools. They let her know how I was doing. They even gave the hurt so badly. After I returned to my room, from the 800 number, to the desk, so that she didn't have to whirlpool, my husband, sister, and or the nurses pay long distance charges. When I went back for a would slather Aquaphor on my skin and wrap me in follow up appointment, I was greeted warmly by all gauze bandages. I looked something like a real life of the staff who saw me come in. Those who hadn't mummy. My skin was debrided, blisters removed, seen me arrive, dropped by the examination room to once a day by a dermatologist. He told me one see how I was doing and to say, "Hello." It was the night that I had an amazing faith considering what I http://www.sjsupport.org/newsletter/2004/september/pdfnletter.html Stevens Johnson Syndrome Foundation OnLine Newsletter see how I was doing and to say, "Hello." It was the night that I had an amazing faith considering what I same extra caring and concern that I'd received as was going through. I hated what he was doing to me, but I looked forward to seeing him. He was a very kind, gentleman. After the debriding, I would be Realizing that they had literally brought me from
slathered again and bandaged. I was treated very Death's Door, to recovering as well as I had been, I much like a burn victim. (They talked about moving wanted to show my gratitude in a way that me to a burns unit in Cincinnati, but the doctors and acknowledged them forever. On March 29, I my sister felt it was too risky.) The biggest fear was that some of the open skin would become infected. "Incongruity," to the Burn Center staff who had They tested my open areas often to make sure I wasn't developing any infections. I did develop a few, but they either upped my antibiotics or put The dedication statement reads: "This painting is
bacetracin on them. I was evidently suffering from dedicated to the wonderful staff of the Spectrum sleep deprivation. Finally given something to help Health Regional Burn Center in appreciation for the me sleep. The whirlpools were still awful! So much highly professional care that Mr. Smith received pain. The doctors tried to find a pain medication that during two weeks in January and February of 2004. would make my whirlpools feel better. They tried “Even after discharge, during follow up visits, Ativan. I thought I was being chased by my IV pole. their care and concern were still evident. They are They tried Demerol and I thought I was a cartoon truly exceptional,― said Mr. Smith." The character and I hallucinated that buildings outside of dedication, on March 29, was one of the most my room were jumping around. They tried Haldol. meaningful events of my life. None of the staff knew That one was the worst. I got down to the whirlpool that I'm an artist and that was brought up to me, and my jaw started locking shut. I told my sister I very pointedly, by a couple of them. A printout of was having trouble breathing. She told the PT the painting had been posted on the bulletin board people to call upstairs and tell them to call my and the colors were way off, besides being too dark. doctor immediately to reverse the effects of the They were very happy with the actual painting. A drug. Months later she told me that she thought I room is being remodeled, as a Burn Center was going to die right there! Thank goodness for pediatric waiting room and the painting will hang Morphine. As a last resort they tried morphine. It there. I was told that the interior designers had been worked and gave me few side effects. Although I did stumped as to what colors to use and were very tell my sister that I saw her running a marathon in excited about the colors in the painting. Perhaps her underwear. I also told my husband to watch out that will be the color scheme of the room. The for the car; all the while he was sitting on my bed. painting will fit, perfectly, I was told, because it will During this time, visits from my daughters were bad. appeal to children and adults, alike. I'd expected They had to wear gloves and a mask. I was in a everyone to rush back to work, immediately after room that allowed me to breathe only my own air. It the presentation of the painting but there were was an isolation room. My youngest cried and told cakes and coffee, afterward. Again, they were me that I wasn't her mother. My oldest didn't know showing that flair for giving extra caring attention, what to do. On Monday the 26th I evidently flipped when it wasn't required. We spent some time, out. I remember seeing my husband in a red and chatting and snacking, although I couldn't have any, white shirt, on top of me. He held me down for 3 because I'm still on a feeding tube. There are some hours, 11 p.m.-2 a.m. Months later, I asked him in the freezer, to enjoy when I can eat normally. what I was so flipped out over. He said that I called When I left, it was a very satisfying feeling, knowing him the devil and that I was fighting the devil. I slept that the people who probably saved my life, will through the 27th-my oldest’s birthday. By Wednesday morning I was alive again. My doctor gave me a stern talking to. He basically told me to get my act together and start healing. I was terrified to go to the whirlpool. (Terrified doesn't even do the idea justice. I was scared out of my mind at the mere thought of going to the whirlpool again.) The chaplain layperson came in and prayed with me. Then a priest my family knew came in. He and the layperson prayed over me to give me strength. I made it through the whirlpool and things started turning around. From that point on, I continued to get better. My sister, bless her heart, dropped SJS Awareness Month
everything and flew up on June 19th to be with me. http://www.sjsupport.org/newsletter/2004/september/pdfnletter.html Stevens Johnson Syndrome Foundation OnLine Newsletter SJS Awareness Month
everything and flew up on June 19th to be with me. Through her efforts, I feel she saved my life. My best Once again the SJS Foundation participated in the
friend came to see me almost every other day. She Westminster Fair, located in Westminster, took care of the girls several times. She gave my Colorado. Our Awareness booth was a huge oldest daughter a birthday breakfast and cake. My success. The Government Proclamations were husband - What a trooper! He did things for me I displayed as well as SJS photos and information on know no other husband could have done! I am so 3 display boards. We distributed over 500 SJS Fact lucky and so blessed. He was there constantly. He sheets from 10 AM until 5:00PM. It was a long day was caring for the girls, caring for the house, and but well worth the time. SJS survivors Amit Khatri, visiting me. During all this, he was interviewing for Penn Street and Julie McCawley volunteered their Principalships. He got his job with Milford, all the time to help pass out information. One woman knew while spending the night in the hospital. I came a little girl in California that is a member of our home on July 5th. I was a little scared of what life support group. Many people stopped and asked held in store for me at home. I tired so easy. Just questions and thanked us for being there. Special walking to the kitchen was a chore. Eating was still thanks to the volunteers that helped to man the not fun. Thank goodness for Jamocha shakes. I booth. We couldn't have done it without you! worked hard to get my stamina back, but it was To see the slide show of Volunteers in Westminster
hard. I wasn't able to go to Orff II or be in the Summer Band. I had to rest a lot. By August I was feeling some better. My skin had finished peeling by then. My sister and her family came for a visit. She told me many things I didn't remember. Funny things I had said when I was out to lunch. Her husband took pictures to document my scars. I remember one night during the first week I was in the hospital. I saw my sister crying. I thought she was upset because she missed her son. She said no, she was crying because she was afraid. She didn't want to say it, but she was afraid that she wouldn't be able to do enough to save me. Years Fundraiser for the SJS Foundation
before she had been a mobile nurse with Humana Hospital in Louisville. They had sent her to a burns unit outside of Atlanta for six weeks. She hated We need your help! The SJS Foundation has been
every moment of it. The pain. Little did she know offered a great fundraising deal through Home and that because of that experience she was able to Garden Party. We will be selling 10 oz. jar candles. communicate that knowledge to the nurses and my husband at the hospital. This knowledge saved my life! Oh, He works in mysterious ways. If the customer buys:
I continued to go to my dermatologist long after I got 1 candle.the price is $8.00
out of the hospital. He checked me twice weekly and then once weekly basis for quite a while. Close 2 candles.the price is $7.00 each
to the last visit he asked me if I fully realized what I had been through. I of course said yes. He then told 3 or more candles.the price is $6.00 each
me that I was more than a little lucky; I should be pushing up daisies. The two conditions I developed These 10 oz. jar candles have a 50-hour burn time.
can be fatal. Stevens-Johnson’s Syndrome and They are fully wicked and scented from top to Toxic Epidermal Necrolysis are very serious bottom and provide a nice, even surface burn, not to reactions to drugs. TEN has a high rate of mortality. mention a wonderful fragrance! There are a total of Sometimes as high as 90%, according to the 18 fragrances available, and they make wonderful research I have done. Patients with TEN also have a 90% chance of severe eye damage as a result of the condition. I have the same prescription as I did Please contact us by email at sjsupport@aol.com If
you would like to participate. We will then send you Pamphlets and order forms and SJS Fact sheets. Yes, I still have scars, dry eyes and nails that look funny, but I am here enjoying my life. How lucky http://www.sjsupport.org/newsletter/2004/september/pdfnletter.html Stevens Johnson Syndrome Foundation OnLine Newsletter Pamphlets and order forms and SJS Fact sheets. This is a great way to raise funds and awareness funny, but I am here enjoying my life. How lucky into SJS. We appreciate your help in this Special Thank You from SJS Foundation.
Giving a kid a hug!
Thanks to Christopher Simpson and the Knights of
York for their generous donation to the Give a Kid a
Hug Fund. Thanks to their generosity we have been
able to purchase SJS Teddy Bears to send to our
littlest SJS victims. These 20 inch bears are made
of soft material and are very huggable. Each bear
wears an SJS T-shirt with the light house logo on
the front and we also send a handmade fleece
blanket for them to wrap themselves in for a hug
from the SJS Foundation.
!! New !! SJS NewsLetter ON LINE
As most of you are aware the SJS Foundation is a non profit organization. We depend on grants and
donations to survive. Due to a lack of funding, we have been forced to make some changes. While SJS cases
are on the rise, the stigma RARE is still associated with it. Newly diagnosed patients and their families are in
dire need of SJS information packets. Unfortunately a decision had to be made to distribute the newsletter
that was more cost effective. This will help us to continue to provide information packets to those in need.
Thank you for your understanding and continued support.
If the information contained in our website was helpful to you, please be aware that it has been made
available for public access strictly through volunteer effort and funding. The Stevens Johnson Syndrome
Foundation is a 501(c)3 non-profit organization dedicated to promoting public awareness to adverse drug
reactions as well as to provide immediate information regarding treatment of those suffering from this
devastating affliction. Please help us keep this website running. Your tax-deductible donations will help us to
continue this good work.
[ Click here ] to make your generous contribution to SJS Foundation.!!
Articles or advertisements referring to specific programs, services and/or products do not constitute endorsement by the Stevens Johnson Syndrome Foundation. Articles involving medical aspects of SJS are not intended to be medical advice and readers are cautioned not to make any changes in their treatment based in information without consulting with a physician. Information for Donors: The Stevens Johnson Syndrome Foundation is a 501 (C) (3) tax-expempt corporation. All donations to the SJS
Foundation are tax-deductible. [ Click here ] for Tax information.
Copyright 1997. All rights reserved. Contact Webmaster: Amit Khatri http://www.sjsupport.org/newsletter/2004/september/pdfnletter.html

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