Where Have I been? Health Update + Exciting Things!
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- Опубліковано 12 вер 2024
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Disclaimer: I am not a doctor or in any profession of the sort. I am just here to share my experiences.
💛 FAQ 💛
how old are you? ➡️ 23
what is your chronic illness? ➡️ Nephrotic Syndrome Minimal Change Disease Frequently Relapsing Steroid Sensitive
what is your profession? ➡️ Professional performer
ethnicity/nationality? ➡️ British Born Chinese
What medications are you at the time of this video? ➡️ 5mg/10mg alternate days, 200mg Cyclosporin, Rituximab Infusion
sub count: 1136
Hi, Jasmine! We discovered your channel researching rituximab, which my daughter will be getting (just as soon as insurance decides to cover it…) She has the same diagnosis as you and has not been able to come off steroids since January. I just wanted to say thank you for making these videos. To see someone so happy and strong, not letting this thing get in the way of her dreams, has given us hope like few things have since her diagnosis. I’m writing this next to her hospital bed while she sleeps and it’s honestly strange but immensely heart warming to see your update today on the first day of our latest hospital stay. You’re an inspiration to my little girl (you even share the name of her favorite Disney Princess!) and when she wakes up, she’ll be happy to hear you’re doing well. Take care.
You helped me soo much for my 6 year daughters Infusion!! We are in tha U.S. in Mississippi. Kyra has Steroid Resistant Nephrotic syndrome. She's still on a Organ transplant medication to heal the kidney cell wall. Your videos helped me get through this with Kyra having her 1st Rituximab infusion. She Hated getting stuck and then afterwards she was fine! Kyra had to have 1 treat a week for 4 weeks to Le Bonheur in Memphis. She was back at school the next day. She is A Ball of energy & then gets weak. Being 6, she just doesn't want to slow down! But now she going good. We are so happy to hear your going soo well!! We wish you Luck!! 🥰😍
Welcome back, Glad you’re doing good!!! ❤️❤️
I am so happy for you!!!🤗 STAY STRONG!🤗
Enjoyed this. Thanks for the content.
glad your having fun with the theatre
Always nice to see you :)
Welcome back !!!🥰🥰🥰
Soo happy to see you back jasmine and glad you are stayed in remission. It’s a coincidence that me and my husband was wondering how you are doing after our son’s appointment today that he is going to start cyclosporine soon . Unfortunately the rituximab in July didn’t work for him. Best wishes that things stay in remission for you.x
Hi Ferin, I know it sounds strange to send this text, but my son is recently diagnosed with MCD and we live in Dubai. They are proposing Rituximab and I'd love to hear how was your experience for your son on this medicine?
You are so strong a brave doing all this even if you are taking all these strong medicaments
YAY nice I also had a story similar to jasmine's i finished my rituximab 3-4 week after jasmine and am waiting for 6 months in remission to see if it will come back. Meanwhile I catch up on growth. This is an additional thing that mostly only kids as me have to face.
My doc dropped prednisone immediately before rituximab first dose. And used some other medication as a transition between the doses.
Hi. How u doing now? My brother got his first rituximab infusion yesterday.
@@victoralbertoaraujodejesus6287 great good but after i went in for my third a year later i got a alergic reaction so now i am on tacro
so after 10 months of no meds after the retax infusion i got sick and then that caused me to have relapse which led us try to get a third infusion of retax which didn't work
Hi I also nephrotic syndrome patient 10 months
I am from Cambodia country .I also have this sickness .I always watching your videos. I want to ask you how to prevent the hair fall? Can I use any cosmetic on face or body ? Can I make up? Now my face so itchy . I hope that you will reply me soon
Hello there
I have questions.
Did you swollen whole body while you do biopsy?
Because i am on water pill but it doesn’t work for me.
How long it take they to know what it is after biopsy.
Your body is retaining fluid, stay away from sodium. The water pill will work just give it time. I once was like you.