Becki's Story - Stevens Johnson Syndrome- sjs/tens

[Bccwifey]

I too am a survivor of sjs. I had it in 2003. I was only given a 13 % chance of survival. Your story is amazing.

[madssaludes]

keep fighting Becki. :)

[ChandaxxJohnson]

I am a SJS TEN survivor as well. I was hospitalized 5 months ago and feel like I've gone through hell and back. I am thankful to be alive but feel like I am only half living because I am still suffering with cronic fatigue and severe photophobia. I would love to know if anyone who had SJS has recovered fully from photophobia. I would hate to have to live with this condition for the rest of my life. Please help with any information or advice. Thank you.

[SJSsurvivor]

@ChandaxxJohnson Do you have a cornea or eye doctor you see since getting SJS? Your doctor should be able to recommend you to Boston Foundation For Sight, which is in Needham, MA. Just outside of Boston. The PROSE is a devise that has helped so many SJS/TEN survivors regain their life back and help with the pain of photophobia. Best of luck to you.

[shikita007]

my baby sister story is the same... she too is partial blind and has to have multiple surgeries to fix it... i wish no one would have to go through what Ravyn and Becki went through

[ASTRAALLEN]

Bless your heart. I take that stuff. There's a trick to it. But had I seen this video years ago, before I started taking it, I would probably not have. I can't IMAGINE what that must have been like. God bless you. Big hugs.

[entyce66]

this is what lamictal did to you? wow!!! stay strong you r very strong u r def. a survivor

[PeaceLuva882]

I had the more severe version of this, TEN, ironically when I was ten. I was very lucky to have made a full recovery, with really no health problems except for a little PTSD. I can never go in hospitals or see needles and blood. and if I ever get a rash? I freak out and immediately think im going to die..

[SJSsurvivor]

@PeaceLuva882 I am so happy you have no long term issues because of SJS/TEN. I also had TEN. I still have not returned to the hospital that saved my life. One day, I will. I am not sure how I will react as I was blind when I was there and when I left. I never seen a face. Just smell of burnt flesh and the helicopter that would take flight quite often, as the heli pad was just out my window. I have high anxiety when I hear the drug commercials on the tv. Good luck to you! <3

[Palmi2012]

Mi madre ya es mayor de 70 años. Mi padre y yo no sabemos como sobrellevar esta enfermedad. Gracias por compartir sus experiencias. Suerte a Becki!! Dios la ayude cada día y muy valiente!!

[SJSsurvivor]

@Palmi2012 My heart goes out to your mom as well as your father and you. I am sure it is not easy at that age either. <3

[Rangersfan399]

My best friend had it. She had strep and reacted to the medicine. When I went to go and see her, she didn't even look like herself.

[menacetohord]

So your telling me, all you people suffer from epilepsy. thats what Lamotrigine( lamictal ) is used for that causes this so called disease. i doubt this woman was vibrant and this video is a farce.

[PeteDThomson]

@menacetohord Are you fucking retarded? No you get this disease from a reactant to a drug. Like for me it was Advil or ibuprofen. Fucking itiot of course this video isnt a farce. This stuff really happens to people and i went through it also. It aint fun. And what do you mean by this so called disease? God sometimes i cant fucking stand people. Great video by the way! Stay Strong!

[BrieNette]

@PeteDThomson Yes heor she is Retarded

[BrieNette]

@menacetohord your a f'ng idiot!

[MeTaLISaWeSoMe95]

@menacetohord no she isnt you jerk! I have this disease and I got it from cough medicine! It is a severe adverse reaction to medicine. It can be almost any kind. so shut your mouth and learn to respect peoples problems. Shut up and leave.

[SJSsurvivor]

@menacetohord, You need to do a little research before you open your mouth and disrespect others that have had their lives changed or even taken by SJS/TEN. KARMA is my friend, is all I have to say! I just hope you never have to experience this. You will be surely eating your words then.

[midlantic1]

May God bless you with health

[SJSsurvivor]

@midlantic1 Thank you



[TheMusicMan29]

God bless you, Becki.

[SJSsurvivor]

@TheMusicMan29 Thank you

[TheZephyrsWind]

I have this illness myself, a less severe form. My face peels off from blisters that come every day, as well as my chest and most of my upper body. I first noted the symptoms at a very minor level at age 15, now at 23, it has ravaged my body and causes pain all over. Luckily my sight remains, but every now and then, along with the usual blisters will come one like on my left foot's ankle last year, where it literally looked as if half a baseball was under my skin. Still, I can find happiness.

[SJSguy95]

to all who care this is a channel dedicated to SJS survivor stories, if you have a story and you want someone to know it leave it here on my channel.

[mockingwiththedead]

she's a strong and brave woman, to go through all of this, i wish the best for her <3

[H1TMANactual]

House

[amacardo]

I send her thousand of blessings, I know how hard Steven Johnson is, and I hope and will pray she can recover her vision

[mstreicher1201]

I don't even know what to say. So strong and such an inspiration for fighting your battle and survive it. God Bless you!

[breakdown2999]

thanks for sharing. i hope you are feeling better

[breakdown2999]

thanks for sharing. i hope you are feeling better

[tolivar1]

I'm surprised noone talks about the pharmaceutical companies and the drugs they create. This horrific situation is brought on by the drug companies. Of course, this is only one of so many side effects of pharmacuticals. The number of people killed and injured by them dwarfs all other causes of death and disease. Lets examine the cause.

[MeTaLISaWeSoMe95]

@tolivar1 i see what you mean, and i myself am a survivor of this horrible illness, but you must also come to realize that these drugs also help so many. i hold nothing against those who made what ever did this to me, i forgive them and do not hold them responsible. i was meant to have this, maybe to help spread the word and help get the info out there, maybe to suffer for something i did or have yet to do. the same drugs that did this saved countless others so i have no complaints, sixteen BTW!

[JAZZYBOOabc]

i went throught this a year ago horrible nbow im 14 and left with a horrific expierience, and dark spots all over my body :(

[Tanyadoll33]

**May God bless you, Becky darling, and may his love with your faith keep you strong and help ease your suffering...I am praying for you and other victims of this dreaded reaction/condition everyday<33

~Namaste'~

[missogoligiviaga]

Send you lots of love and courage!!

[MeTaLISaWeSoMe95]

I have had two SJS reactions the first was when i was eight and the second when i was twelve. i couldnt eat solid food for two months. they told me they didnt know the exact cause and just told me not to take any medicine at all unless my life depends on it.im 15 now and i havent touched medicine in over three years. still have hearing and sight problems from it though

[SJSsurvivor]

@MeTaLISaWeSoMe95 I am sorry you have aftermath issues from SJS. Have you been to the Boston Foundation For Sight in Needham MA? Where do you live? There will be a Team SJS in September at the Fox City Marathon. There will be several survivors and their families there..September 17 and 18. My family will be attending this event. It would be nice to get all that would be interested in attending to connect with other surviviors and families. Best of luck to you!

[MeTaLISaWeSoMe95]

@SJSsurvivor cant but thanks. i wear glasses but it doesnt really affect me now aside from that im good, and my hearing is getting better but it can still be tough to hear people occasionally. by the way my name is James.

[pook880]

Becky, I know and feel your pain. I'm also a SJS survivor. I had it when I was 7 years old back and it was caught right when the first systems showed up. I was lucky enough that it only affected my eyes, damaging the lacrimal glands permanently. I'm now almost 39 and I can't remember what it feels like to live a day of my life without any discomfort in my eyes due to severe dryness. My skin healed after a few months, but I'll never forget what I went through as a kid. Remain strong & God bless.

[SJSsurvivor]

@pook880 Have you gone to Boston Foundation for Sight in MA? I believe 98% of the people that go to BFS have a positive outcome. Look into it so you may feel the comfort that so many other SJS survivors have found. Good luck to you

[TheLfwjo]

I have a friend diagnosed with SJS last week. It is just starting, I hope she can get over this. Let us pray for them, the victims of SJS.

[jensh684]

Thank you so much for sharing.

[SJSsurvivor]

@datagirl122 It seems to me that I have met more people that has had a SJS reaction to Lamictal more than anything else. I am sorry you have to deal with the aftermath of SJS also. If you ever wanna chat, I am on FB. Best of luck to you.

[modelflyer2003]

Thank you for your story. I am sorry tha you have had to endure this hardship. I am in family nurse practitioner school and a fellow student posted something on antibiotics that mentioned SJS. I was goingt to respond to her post and wanted more information. I found your story. Thank you for putting a face to a list of symptoms in a book. Good luck to you and your family.

[duvexy]

Stay strong and sue them for what they did to you.

[2549SHELLY]

I am so sorry for all your pain I also had this happen to me I hope you will stay strong and safe my problem is my skin I know have four skin disorders I will never be the same , but that's ok I am a live .

[vini54321]

My Dr. just prescrided me Lamictal!! Im chunking that bottle in the trash!!

[Lionsidiot]

@vini54321 good...dont take that crap...

[Lionsidiot]

This wonderful woman I got to know when I assisted in taking care of her where I work. I already knew her husband prior to this incident and considered him a friend also. What she has gone through is truly remarkable. But as a family...it is more remarkable still if you really think about it. I am truly glad that as a family they are all considered friends of mine that I love dearly. It is out of love that I want to help raise awareness and help champion this cause.