Stevens Johnson Syndrome

[SierraBMX]

My Dad was also diagnosed. Thank god he is getting better. You are beautiful and don't ever let anyone tell otherwise. ♥

[DominiqueZone]

your beautiful! nuf said :)

[MeTaLISaWeSoMe95]

Hey everybody. Im working to get the govenor of Virginia to announce August as SJS awareness month. please help me by going to your govenor (email, mail, call, etc.) and ask him to do the same. please help everyone, dont let this happen to anyone else ever again!

[livinginbedlam]

Hope you made a full recovery. You seem like a very strong person. Take care and all the best.

[DiamondDecoy]

I had Steven Johnson Syndrome when I was 16. It was a horrible experience for me, so I know how you feel. I'm glad you pulled through!

[koiching]

Thank you so much for uploading this video. It helps a lot of patients as well as health care professionals to understand the disease.

[TheMeDobbs]

You're still beautiful, don't ever let anybody tell you otherwise. Get well soon.

[ilovetoCrochetStuff]

Im glad your alright (:

[night1wind]

good to hear you'r alright :)

[Ministry4Alll]

Thank You for sharing!

[bugz742]

I luv how your speaking out thank you I needed that

[bugz742]

I luv how your speak ing out thank you

[TheZephyrsWind]

I don't see you as ugly, and I don't tell lies to make others happy either. Myself, am affected by this disease mainly in the face and chest. My skin peels off and blisters every day like a bad sunburn, but not all the same general color like a sunburn. My neck, scalp especially, and around my ears, are all also affected. I used to have thick hair and now it is thinning, and I shave it off so the hair movement isn't disturbing, I know to an extent what it is like, so please, don't feel alone.

[Jayman493]

Your not ugly. Actually, when you look at it in a different way, you look kinda cool.

[ZZRgirl11]

It's what's inside that counts. The eyes are the window to the soul...

[SJSguy95]

to all who care my channel is dedicated to the stories of those who have SJS, if you have a story you can leave it on my channel.

[vidaman100]

Your still beautiful

[rapingpeterpan3]

Holy frig, I get one bad zit and I feel hideous and ugly. You poor lady. It must be so hard to be you. Fate must have thought you very strong to be able to carry such a heavy load. You inspire me to be a better person, thanx. A wise lady once taught me not to let illness be a crutch, so once you've cried all the tears you're so rightly entitled to, I hope you get even stronger and happier and not let illness be your crutch...tackle life on your own terms. I wish you ever so much luck.

[any12u]

You are not but ugly, not by any stretch of the imagination. I'm sorry to hear about you affliction and I hope you have or will find the support you need. I am from MA myself and the cape, the ocean has always been a peaceful and beautiful place to be..when you go listen to all the prayer that come to you riding in on the waves..Love and Light ~Sandy

[addz316]

:-( xxx

[KraftLand]

Don't worry Rachel youll be ok!

[spunkyrachel]

@KraftLand I'm great now!! Thank you!

[timojattu]

@spunkyrachel Hey Rachel, when i was younger i had an allergic reaction to some drug. Now im 17 and im taking anti-depressants, do you know if they can cause SJS, also i wonder how many people suffers from this condition. Thank you truly are an inspiration :)

[an0nim0uz]

@spunkyrachel Great to hear you're alright Rachel.

[slayer117600]

hope you get better!

[boomguy12345]

You're ugly now, but it's fine.

[prendas17]

be strong girl ;) you  are beautiful person

[angodamango]

amen sister! count me as a supporter!

[matthewlagrange3000]

God will bless you. You are so much nicer than me. You don't deserve this. I am an awful human being compared to you.

[Iamyourmomhearmerawr]

You are not ugly my dear, you are very beautiful. My cousin was incorrectly diagnosed with Steven Johnson Syndrome, so my family knows what is like hoping things go back to normal. Best of wishes.

[xxpunkxxlovexx]

Don't ever feel uncomfortable!. God is gonig to help you in Jesus name hun!. You are beautiful the way you are! <3

[kjkmpmm]

God bless you. Just remember beauty is inside a person, not outside. Hang in there. I will be praying for your full recovery.

[maddy8942]

NO DISRESPECT BUT WHAT IS STEVEN JOHNSON SYNDROME? AND I HOPE ALL IS WELL ON YOUR SIDE

[dangerwoman3000]

You are beautiful and do not let anyone tell you diffent I live in CT and I will pray everything goes well.

[BigOnumba44]

You are very beautiful may God bless you

[MusicPortugal1]

Beauty, true beauty, is within the hearth, the soul.

Not on the surface....for a sweet smile can cover a sour face; and a beautiful countenance can mask a foul heart.

[Dezzid143]

God Bless You!

[silvpaula]

You are not ugly Rachel you are a lovely and very brave person , don't give up hope never ever I pray for you to get better all the best wishes in the world my dear

[MegaSuperdude2]

God bless you. You are a beautiful and powerful person. Screw that little boy!!!

[CarlWarnberg]

Jesus loves you!

"For the Lord sees not as man sees: man looks on the outward appearance, but the Lord looks on the heart." 1 Samuel 16:7

You are beautiful. Never forget that. :)

[gridisraw]

Man this sucks ;(

No one deserves this

[TheKillerboo12]

stevens johnson syndrome is loss of skin ? i'm confused x(

but STAY STRONG BBY! ! !<3 you pulled through you deserve to be here ! have faith, in my prayers hun <3

[DreamCore2011]

How recently were you diagnosed when this video was made?

Is this something that grew over time, or was it more like a sudden attack?

[TheKeyWestian]

I feel bad for asking, but what is Steve Johnson syndrome? Please get better!

[ewyou1]

You are a beautiful person! Never ever feel ugly. Please get better.

[killerhippo10]

that is seriously horrible hope you get better 

[climbv9]

get well please

[MovingUpp]

Jeesus. Seriously good wishes for you.

[SmelllieKat]

You shouldn't feel ugly... It easier said then done. But you are beautiful! Prove people wrong...

[ana183247]

I don't care what anyone says, you're beautiful, inside and out x

[kekomon12]

Your such a strong person thank you

[laurab0427]

You are a strong and beautiful person! thank you so much for spreading awareness.

[mysugarbubbles]

ur beautiful, I hope u find that support group... My prayers are with u

[199Raz]

You look like freddy.

[breakdown2999]

Im in 2nd yr of medical school. thanks for sharing. you are a beautiful person. i hope all the pain is gone. enjoy your day!

[buzzdc]

Rachael there is an SJS support group on Yahoo. It's all SJS survivors and people that care for them. It's a great resource and also a good place to vent and share. I had SJS/TENS in Nov of 2009. My biggest obsicle has been my vision. I was left blind in one eye and compromised in the other. Constant pain and irritation. I wish you a speedy recovery beautiful..

[buzzdc]

Hi Rachael,

[xmobster5]

I am very sorry. I will pray for you! Please stay strong!

[WO2GameGuide]

You are beautiful .hope u get better soon

[markatack99]

i hope you get better !! THIS MADE ME CRY :( ...

[Shay102269]

Your not Ugly....your beautiful....the person within shines out of you and makes you humble and sooo beautiful. Stay strong and God bless....

[niceflower22]

your beautiful hun never forget it ! : )

[missogoligiviaga]

Stay strong send you lots of love and courage!

[xMamiiRiahx]

I will pray for you and your nephew. What's his name and where is he from? It will be a long road, but keep the faith.

Spunky

[leesjshelly]

I pray for you, my nephew has just been diagnosed with this disease also, he is 33.

[JuggaletteGaige]

Even with this disease, u r still beautiful! Stay strong!

[lukeoca]

You are very brave and seem to have the right attitude to deal with this. I hope you recover more - I sincerely admire you for making this video. Good luck and love from England, UK

[nicedog79]

ive got this. and im 13

[jtking2504]

Did you take anything like antibiotics before you got this?

[JonathanLauderdale]

Well you are certainly beautiful! We all should know skin is skin whether different in texture or color, we are all a little different which makes us humans beautiful. I have SJS too but not as sever. I can only imagine your pain. Mine stayed with my mucus membranes only. Bad enough for me. Take care beautiful!

[anthonymss]

how are you doing now? my dad just pass away because of SJS...

[DazetX]

I actually got a tattoo that stands: stay strong.. that is what im gonna do, and you too :)

[Mikesgurl05]

DARLIN U R GORGEOUS N DON'T LET NO ONE TELL U DIFFERENT WE R ALL BEAUTY QUEENS IN GODS EYES N IN MYEYES U R GORGEOUS.!

[duvexy]

What medicine were you taking that caused the Stephens Johnsons' Syndrome? Have you looked into epilepsy support groups too?  There are some epileptics who ave suffered from Stephens Johnsons' Syndrome.

[alishawoo1997]

U are very pretty. No matter what people say.it's not wats on the outside it is wats on the inside. U r georgeos u will inspire hundreds of unfortunet people. God bless you xx :)

[spunkyrachel]

Thank you for you kind words! I just had my friend translate for me. I have been strong and full of faith and courage. And yes God has helped me a great deal. Huggsss back to you my friend!

[dragadroyd]

amigo força ai!tu consegue !acredita voçe é amado em todo o mundo e reconhecido por sua coragem e fé!acredita em Deus ,mesmo que tudo indique que não esta ai para nós ,todos temos um proposito!um abaraço e força muita força!

[smilingchick95]

God is granting you a second chance<33 don't throw it away

[blueeyes446]

we learned about this in school. iam rasing money for sjs. i think your the prettist in the world

[bnd1251]

I was just looking up this syndrome because my aunt was diagnosed with it today after taking medication for a kidney problem. I am glad to see you are recovering well!!

[spunkyrachel]

@techrevs Good luck to you and just pay attention to any chances in your skin.

[spunkyrachel]

Oh I see! I normally don't wear makeup but when I do, its not painful at all. It just looks like I'm trying to cover something and I dont' like that. I look so much better now than I did in this video. As time goes on my skin improves. I am no longer in pain and completely healed. : ) Thanks for you comment!

[Darunatura]

my ex suffered a nasty accident a few years ago leaving a large scar accross one side of her face. fast foreward a few years and with the use of makeup she can completely hide it I was shocked how effective it was. I was wondering if the same sort of techniques might work for you? But also was thinking maybe putting powders and such on your skin might hurt as you said you were still experiencing some pain.

Also this vids two years old how are you recovering well? hope so of course.

[spunkyrachel]

@Darunatura Oh I see! I normally don't wear makeup but when I do, its not painful at all. It just looks like I'm trying to cover something and I dont' like that. I look so much better now than I did in this video. As time goes on my skin improves. I am no longer in pain and completely healed. : ) Thanks for you comment!

[Darunatura]

Goddamn your strong! Good for you being so tough. Was just wondering if you find cosmetics painful?

[spunkyrachel]

@Darunatura Not sure what you mean regarding cosmetics.

[BEBE1484]

God will help you because I have same sindrome last year and he helped me all the time, now I'm good that's means that god is there.!;)

[abqskinhead]

You are a beautiful person. Don't let anything or anyone get you down. Stay strong and get well soon. :-)

[spunkyrachel]

@abqskinhead Thank you! I do my best.

[josegomez149]

i took dylatin but nothing happened i quit because my siesures stopped

[PilotMcbride]

GOOD ON YOU RACHEL!!

I am the father of a sufferer of SJS currently in hospital with his second major bout of the disease. First bout he lost 94% of his skin, this time the Doctors appear to have stopped its progression before it could progress to that stage again.

Your inner strength will see you through this and hopefully you will now lead a normal life.

I'm on Facebook, so please do not hesitate to write to me if you need to talk.

Stay strong mate, please :)

[04davidgail]

You are a very strong person !!!! My daughter has it right now and it is terrible.

We went to Loyola medical center in Chicago/Hines ILL. They where the best.....

You are correct, we all need a support system to get through this. Family or friends is a must. Even a stranger who has it is also very good to have and talk to.

Take care and write or post when you can.

[blondeycheer0019]

Your beautiful! Don't let anyone tell you different !

[dharvey87]

your very strong lady, but this disease it really bad to yall should check it out

harlequin ichthyosis

[xMamiiRiahx]

Yes, your right it has gotten better, much, much better! Thank goodness! Thanks for you comment and have a wonderful new year!

[shikita007]

Stay strong... Ur Beautiful on the inside and that will radiate onto the outside... things will get better its 2010 so im sure it has...

[ALLIED7621]

You are tougher than I will ever be.

[darklight3182]

In 1995 I took my 3 yr. old son to the emergency room with a case of hives but it quickly overtook him. I left thinking he was just in for observation and IV meds. In the night his throat closed and he went into cardiac arrest. The Dr.'s brought him back. When I arrived in the morning I was finally told the true nature of his condition. He is 18 now and in perfect health every since. Praise be to GOD! I hope in time that your ordeal will also seem like a different lifetime.

[CastellanoSemental]

Wow, I am so sorry for you. I know some people don't like "pity"(not sure if that's right, not ment in a bad way/not american) But i do feel sorry. No one deserves something like this. I can't imagine all the pain and feelings you must've gone through. But you seem strong and your heart is big.

I have had a lot of complications in my life with different stuff. 2 times i was nearly killed.I have had a lot of surgeries and so on(not a desease)Think of this as god is testing us.keep being strong

[2425260]

You are not ugly at all.

[TheCatAteMyShoe]

You are NOT ugly! You are a wonderful, smart, beautiful person. It's terrible that people tend to judge a person solely on this outward appearance.

[DiverseMGO]

Lol that was gold "Now I'm just butt ass ugly" you're a very strong woman and i hope you keep fighting on.

[TriciaTrotmanMaraj]

God bless you and you are healed in Jesus name!

[TexMexMom1]

Hi Rachael, one of my friends that I work with her daughter that is 3 was diagnosed with SJS and was in the hospial for a while, she did get better. Let me just share something with your words, are insprational, and please keep your head up, and just hang in there! God Bless You!!

[spunkyrachel]

@TexMexMom1 Hello, Thank you very much for being so kind. This little girl you speak of, is her name Riley?

[Texas2Ohioandback]

Spunky? How is your SJS now? I take Lamictal which is an anti-seizure medication. I've heard that some people can contract SJS from the kind or meds I take so I hope I don't contract it at some point, doesn't look fun at all. Hope everything is under control for you. God Bless.

[spunkyrachel]

@Texas2Ohioandback It's much better now thank you. My friend was just diagnosed with SJS 3 days ago due to Lamictal. Be careful! Take care!

[gaffad1111]

@Texas2Ohioandback - I am off of Lamictal due to Lamictal caused SJS. Luckily I caught it before it turned into the rash phase.  I should've wondered about SJS when I HAD TO use tweezers to pull off all of the 1st layer of skin in my mouth.

[Texas2Ohioandback]

@gaffad1111 I have flaking and irritation on the backs of my ears where the arms of my glasses rest. I'll talk with my doctor about it when I see him next month. Did you have any problems with both head and chest pains while waking up in the morning because I do once in a blue moon. It knocks me for a loop. Also, what meds are you taking now, and how long did it take for you to step down off of the meds?

Sorry, I'm just really curious.

[shikita007]

@Texas2Ohioandback my lil sister now had the SJS from taking Lamictal with Valploric Acid... so watch out...

[Texas2Ohioandback]

@shikita007 Was she taking it for Bipolar or Epilepsy, and what meds is she on now?

[MsWeightlossjourney1]

u r beautiful

[spunkyrachel]

@MsWeightlossjourney1 Thank you, thats very sweet for you say!

[JimiLuvsMusic]

I hope everything gets better for you.God Bless

[spunkyrachel]

@JimiLuvsMusic everything has gotten much, much better thank you for your concern..

[sandmansea]

you look a strong person

[spunkyrachel]

@sandmansea HAHAHA!! So I have been told. But most time I don't feel so strong. sometimes being strong is the only choice your left with.

[sandmansea]

@spunkyrachel i know that, sometimes, i am such a weak person. i live in europe or less i would have loved to meet you. take care you give a positive energy

[gaffad1111]

@spunkyrachel - Rachel, I hope you're doing better. Don't think of yourself in the manner in which you stated. A non-superficial guy will judge you for the whole package. I have dated gals that were knock outs and once i got to know them, they became ugly in my eyes; all because of their attitudes / personalities made them ugly. You have a lot to offer, and I'm sure you have helped more than u know with your great video. Good luck :)

[screwtape84]

Thank you for making this video, i had never heard of this syndrome before.

[Punkyfishguy]

Wow..

id never heard of this before!

this is shocking..

prob one of the most visually traumatic

diseases/syndromes

iv ever seen!

Ghurl kudos and a big asspat on the back to u!

[spunkyrachel]

@Punkyfishguy HAHAHA!! Thank you so much..

[Synthbomb]

Hi Rachel I too have had SJS not as severe as yourself but I too pulled through then the doctors said I wouldnt .. my heart goes out to you, and I wish you nothing but the best in the future.

Josh Ricard

Kenora, ON

Canada

[juleserino]

Not ugly, you are

brave. I hope you find your support group.

[WATTHECHEESE101]

Stevean johnson syndrome? What is that

[SANDRA2960]

HOLA.......YO TAMBIEN TUVE STEVEN JHONSON.....YGRACIAS A DIOS ESTOY BIEN......DIOS TE BENDIGA..

[tamy9190]

He, i live in argentina and i was about to have this deseas too becouse of a medical adeversal reaccion but luckly thay found it out before it started,

im really sorry you had to go through this, but i'm sure i'l feel great i some time

hope the best for you <3

[tamy9190]

He, i live in argentina and i was about to have this deseas too becouse of a medical adeversal reaccion but luckly thay found it out before it started,

im really sorry you had to go through this, but i'm sure i'l feel great i some time

hope the best for you <3

[DSviewGirl]

ok...i just want to tell you...that i hope that clears up. p.s. u may not be able to win ms. universe, but your heart id great!

[pinf12w]

You're a brave girl for doing this. God bless

[guero1975]

hie..i see you video by mistake..bud you are super kool ans srtonge, love the way you talk abouth your self..that request big ball.. and you have it...i am proude of you..by the way you now have a mexican frined if you want to come and eats beans with me LOL..see ya!

[lestacio18]

FirstI just want to say that I feel your pain...literally. I ha SJS/TENS when I was 14, which was over 7 1/2 years ago and I can definitely empathze wth you about people making comment about our looks. it's rough. My worst after effect SJS left me with was my eye problems. people are always asig me..what happened to your eye..do u have pink eye, did yu getpunched? It hurts me, but you know wha babygirl we are survivors and you ARE beautiful. stay strong pls email me if u ever want to talk

[SANDRA2960]

YOU ARE SURVIVORS..AND ME TOO...

[kopynd]

You Must have been In a lot of pain, I also have this problem,First attack was serious, now I control it with a bag of frozen pea's,it affects the palms of my hands and soles of my feet

[hnksnw]

I am sorry to hear of your condition, you must be strong though. Did they say if your condition was caused by a certain medication?

[mozyCLS]

I really do love you

[nickfeidt]

amazingly strong women you are. i was diagnosed with sjs in 04 My case wasn't as intense as yours but i was hospitalized for a month and a half. almost didn't make it, keep on with the vids.

[JoeyBoya]

You are not ugly... You have the most beautiful heart

[thatguy2905]

i just got over SJS, not as severe of a case, but i feel your pain and i hope god blesses you with the strength to get through not only the physical pain, but the mental. god speed and good luck with your journeys.

there are many many sites and commercials saying we are entitled to compensation. i would rather see nothing to see you get everything, god speed. you are beautiful-

[ocdtwilight27]

I also wanted to let you know that my friend has an sjs support group. Once I ask her for more information about it, I'll pass it on to you. And remember that the only people in your life that matter are the ones who will choose to stay in your life and not see you any differently no matter what!

[ocdtwilight27]

In elementary school my bestfriend had sjs.

Kids made fun of her all the time but I really didn't even notice that anything was wrong with her. We had so much fun together, but I moved and we aren't very close but we still talk. I want you to know that despite your sjs, YOU ARE BEAUTIFUL (that's the God-honest truth) and don't let anyone tell you differently. I'm very glad your alive, because there are a lot of people with sjs who don't make it. But still, I'll keep you in my prayers, alaways.

[TayloreToxic]

aw, im so sorry you had to go through this. stay strong<3

[nesstifer]

you're a strong woman. and you are beautiful :)

[mjplace1]

Sis, I will keep you in prayer I experienced SJS about 3 yrs ago and you are so blessed to be here.

[cristalina09]

im so sorry no one should have to go through this at all. me and you both made it:)

[cristalina09]

i had this tooo. i wasnt going to make it either. but strong people survive. im so sorry no one should ever go through this.and i had comments as well that is why i turned out the way i am. you are beautiful as can be.

[grandsporta]

Hi there! I had TENS in the Army when I was 18. Lost 65% of my skin and was in ICU for 2 weeks. I am now a disabled vet and having to deal with it as you do every day. Eye lashes grow all over my eye lids which scratch my eyes constantly. Very hard thing but you are doing great! Good luck!

[Valya74]

You will survive Rachel! I had TENS in July 97 (A severer form of SJS) and after twenty days of hospitalisation i was discharge and the public gave me the scares too but my hair grew back, the sores heals and my skins no longers have patches. Just take time. You WILL be alright. May God Bless and Protect You.

[Ferapont82]

Thank you very much for this video. Have read recently that SJS can be an adverse side effect of Cipro antibiotic. Recently prescribed Cipro, but haven't taken it. Hoping the fluconazole takes care of "epididymitis". Was feeling sorry for myself having this pain in the you know where; you're video helps remind me people are suffering much worse. That thought doesn't always help when you're in the midst of physical pain, but at other times it helps a great deal.

[Ferapont82]

Just read on Wikipedia that SJS can be a side effect of Fluconazole also. I've been taking it for four days. It definitely feels toxic to my brain/skull. Notice your video was posted in Nov. of 2008. Hope you're doing better. Take care--Bruce

[rayjill1234]

God Bless you , I too, had SJS in early 2005...it was a nightmare. It ws very painful, and nearly lost my eye sight. ...I will be praying for you to make a full recovery, but it does take time...Keep your chin up ;) will be thinking about you ,..Jyllian

[ProKatted]

Hang in there Rachel! You're still attractive! You WILL heal! God will heal you! I have an amazing testimony...don't worry you will heal and your hair WILL grow back! You will be in my prayers!

[Journey2betrhealth]

Hey Rachael! So glad to have finally found your channel. I am a fan of your mom's channel and prayed for you...always wondering how you were doing. Go glad you are doing better.

Donna:)

[kidneedonor]

You will be in my thoughts and prayers..

[topCkurvy]

Hi Rachel! I am a BIG fan of your mom's so I have been following your story via her channel. You have been in and will continue to be in my thoughts and prayers!!! I wish you the very best. Stay strong, BEAUTIFUL!!!! BIG BIG HUGS, Caprice

[spunkyrachel]

Thank you for your kind words. I will be posting another video as soon as I figure out what to say. heehee take care Caprice

Rachel

[rosewolfe48]

Hi Rachel. I watch your mom's videos for GB..My heart goes out to you...I think it is great that you are using what happened to you to reach out to others with the same type of illness..you are so sweet and I am happy that you are feeling well enough to start a vido log on here you are a very stong person..best wishes Rose Wolfe from Hershey PA

[spunkyrachel]

Thank you Rose for the kind words. This isn't as easy as I though it was going to be, but I will continue posting videos. When I figure out what the heck to say. heehee. Thanks again Rose

Rachel

[ru2cute4me]

Hey Kiddo!

You will find a whole lot of support here on You Tube. You are not and never will be ugly!! You're BEAUTIFUL inside and out!

Love you...MOM

[tammpon]

1st off rachel you are still beautiful! I do not have this same disease as you, but I do have a one called crohn's! To save space i'll let you find out how gross it is, but I will tell ya I do poop a lot just too warn ya! :-( lol

Seriously sweetie my late father lived with a burnt face since he was 5, so I know how people can be shallow! :-(

My advice is always remember life is so much more then what others see! I see you as 1 awesome human that's a fighter & survivor!;-)

peaceouTy!

TAMMpON

[TheElliottFamily]

I 2nd that, Rachel. You seem strong...keep it up. I'm sure that there is a SJ Syndrome group out there somewhere. 6 Degrees of YouTube. something will come up! Take it easy! -John

[NJLILI]

I just wanted to also suggest that Rachel add SJ Syndrome in all of your taglines so that anyone searching for SJ can get linked to your vids. Love ya Rachel

[spunkyrachel]

Hello NJLILI, thank you for the tip, I will try that.

[TheiPhoneExpert]

I will be praying for you, along with many people! Good luck, I hope everyting works out for you.