Stevens Johnson /TENS Survivor
This is Yassmeen Castanada's story ... ..
On Thanksgiving Yaasmeen was feeling ill. Common cold, sore throat. A friend offered her an antibiotic pill that her friend had from a previous illness. She was thinking that it would help her, but this would be the biggest mistake of her life. After taking the pill , Yaasmeen started experiencing burning in her throat, eyes and mouth. As the night went by, her eyes became blood shot red and the lining of her lips was already torn off. I rushed her to the ER . The dr's immediately diagnosed her with Stevens-Johnson Syndrome. Something I've never heard about. Immediately I googled Stevens Johnson's and I began to panic. In my mind I knew this couldn't happen to my baby, but deep down in the pit of my stomach was a terrible, terrible feeling. Within 4 days Yaasmeen's appearance was transformed. I watched my daughter's skin burn, blister, bubble, n peel off and there was nothing I could do about it. The pain and agony she was going through just tore my heart to pieces. She was transferred to UCIrvine's burn unit. On December 5th she has surgery to scrape the top portion of her body. She was wrapped in biobrane. 2days later the bottom portion of her body was scraped. As you can see in the photo, she was wrapped in bandages from hed to toe. My daughter was intubated so she couldn't communicate with me. i made sure i prayed over her daily, I spoke to her daily and reminded her that she had a daughter that loved her very much. Everyday i told her to fight for her life. Yaasmeens blood was infected and she has had 5 blood trasfusions. As we got closer to recovery, she had a set back. She was having a hard time breathing. After multiple exams of her trachea, they noticed her airway was closing so she had an emergency tracheotomy. she had her trach for 6months. There have been times where she had trouble breathing. She had another surgery in april to open her airway because it closed and the steriod injections didn't work. On my birthday June 18th she had surgery to reconstruct her trachea. She was able to sing happy birthday to me as soon as the anesthesia wore off. Best gift ever! Today 6/25 Yaasmeen had her stitches removed. Yay! Her left eye is very damaged, she will need a cornea transplant. Hopefully in 6-8 months when she is healthier we can face that surgery. As for now, she will just work on getting healthier and spending a lot of time with her daughter Khloe and return to CSULA! This whole expierence has taught me to never take my children for granted. I almost lost my daughter to 1 pill! She never smoke or drank, she is a good kid that was on the right path. I just can't understand why this happened the way it did. But we will not dwell in the past, She has goals and a bright future ahead of her. I thank all of you for your love, support and prayers for my daughter. *Please be careful with medications because an allergic reaction can happen to anyone. #prayforyaas
There is power in The blood! I am just jumping for joy and Praising the Lord because yaas tells me she can see figures!!!!*update* yesterday Yassmeen had a Limbal Stem Cell Transplant and her sister was her donor. Dr said it went very well, don't know yet how much damage the cornea has but it's looking very positive. My baby girl said she could hear the dr's saying how well it looked. The next step is to be on oral medication for a year, anti-biotic eye drops, serum drops and lots more stuff... The important part is that her surgery went well. She was so ready for this. Hopefully in 2 weeks the blurriness will improve. Thank You Jesus for always being by her side and not giving up on my baby girl! Thank you all for your continued help, support, and most of all Prayers! #prayforyaas SJSsurvivor
The 1st pic is the damages SJS caused, the2nd pic is today after her transplant... Lashes won't grow:-( but it's ok, as long as she can see!
Blessings. I survived SJS and Purpura Fulmanins. I would love to go see her
I really hope you're doing good. My little brother suffered from TENS about 2 years ago. He is legally blind now from the burns but he is doing amazing and achieving things i could never do. I wish you the best in life for you and your family.
God bless you sweet heart! What I want to know is what antibiotic is this??
People who have SJS and or TENS cannot have cornea transplant. Do not let any doctors perform a transplant until all other options have been tried and then wait. Ive been waiting for 19 years for my cornea transplant. The success rate is approx 10% for someone who has SJS/TENS. Please remember that.
Still thinking of you, and hope recovery is going well.
Don't give up! God is with you. Keep seeking for Him and definitely trust in Him. And whatever He gives you, it always has a good reason for it. Because He knows whats best :) Sending my love to Yaasmeen and your family
Wishing her the very best. Don't forget about the (BFS) Boston Foundation for Sight and the scleral/Prose lens. Joe Z
Just wanted to know how you are doing. I hope you are getting better every day praying for you all.
My friend suffered with SJS/TEN 28 years ago and the lingering effects debilitate her every day of her life. She suffers with severe COPD , digestive issues, chronic health issues and just this past year she has had 9 eye surgeries to preserve the little bit of light perception she has in her left eye. The road for Yassmeen is not only going to be long but very expensive as well. Still 28 years later my friend is overwhelmed with Doctor appointments at least 4 days a week. She wrote a book to bring awareness to this deadly syndrome. Her memoir is "Still Wearing My Heels" visit her website at www.michellefrazzetto.com Please support my friend and Yassmeen.
Yassmeen Mi Amor Espero Que Te Estes Mejorando Y Que Te Estes Sintiendo Bien Quiero Que Sepa Que Te Tengo En Oracion Pendiente Y Que Tienes Un Nuevo Amigo VAMOS Ariba Que Dios Es Grande
Praying for you sweetheart. Happy to know you are home now with your loving family. I will continue to keep the prayers going up for you.
Thoughts and prayers for you for a full, speedy and peaceful recovery. I pray for God to touch your body inside and out and make it purely new and perfect! You are quite an inspiration !
So happy to read this update! Will be thinking about you all on the road ahead. God is good!
Still thinking of you guys. My son had a trach also; no fun, but lifesaving! I pray that Yaas wi be able to breathe on her own soon, and I pray for God's love and care to surround you all.
How are the eyes? If she has issues please contact BFS, Boston Foundation for Sight. They have special lenses called, PROSE LENS. i had SJS/TENS back in 1996 and went blind for 2 yrs. I went to BFS and they made me special lenses. Best of luck and let BFS that Joe Z says hi. BFS also has satellite facilities and i think they have 2 in California. Research the website for locations. Boston Foundation for Sight
My I share your story and photos from this page in Idaho on KBRV radio? The photos would be share on our http://mylocalradio.com/sodasprings/ website. Perhaps it will lead to more donations.
God is so awesome! I've been following your story and I am so excited to read about how well and fast you are improving . I will continue to pray for you and your family. May God continue to bless you.
So glad to hear the good news on your recent update! Continued prayers for Yaasmeen...
So excited & happy for your great news!!!
That is really great news! I am very happy for her, and for you, I know for I am a mother too, that it is agonizing to see your child suffer from anything. Will keep praying for complete recovery. Stay strong.❤️