I've had NS for 2 years. I was on 80 mgs of steroids for the longest time. i went into a relapse so I had to take rituxamab (light dose of chemo) which was a year ago. I've been in remission for about 6 months. :) I'm gonna find out if i have to go through treatment in a few months. Bailey is in my prayers. <3
@SUPERsmellySALMON i feel your pain i no its not easy i went into remission when i was about 8 diagnosed when i was 6 i know its tough but trust me if you have confidence people wont mess with ya =)
Last year they found out I had a Nephrotic Syndrome , I was 15 at that time, within 6 months it came back 3 times.. right now I have all the symptoms again, I'm 16, and this really sucks! I have to go to the hospital and stay there for like 11 days, I also lose alot of body liquid, because I gain 30 pounds everytime. I've already had a kidney biopsy, but they still can't find a solution.. they want to try other meds, but I don't want them because they have some nasty effects on you. Xx
@sjoukiie - My daughter who is 16, just found out 4 days ago she has NS and she is so upset, honey I know what u are feeling about the meds I am having the same concerns with my daughter..It's very upsetting nothing is working for her so far..Hope u feel better..keep your head up..god bless u
I had this disease when I was younger, really bad too, up until I was 8. Fortunately enough for me my pediatrician was good and knew right away what it was and when I relapsed he caught it again straight out :)
Only bad thing is I was on Prednisone(sp?) for that long those damn eating habbits stayed and made me fat! Haha!
only just seen all the comments under this video, add us on baileys bands on facebook where we sell cure nephrotic syndrome wrist bands or join our group help raise awareness of childhood nephrotic syndrome... your also welcome to email us at haryan@live.co.uk thank you
only just seen all the comments under this video, add us on baileys bands on facebook where we sell cure nephrotic syndrome wrist bands or join our group help raise awareness of childhood nephrotic syndrome... your also welcome to email us at haryan@live.co.uk thank you
MY grandson has had this for 2 years and has relapsed so many time to count, Nothing works. He is only 3... We need alot of help to control it. Thank you
I am 14 years old and i have had NS ever since I was two. I have been hospitalized like 10 times. In fact, I just got outta the hospital yesterday. I was so swelled i weighed 303 pounds when i forst arrived at the hospital last monday (December 6th) and now, thanks to my medicines (Cyclosporine and lasix) i am back down to 270.5 pounds and still losing weight. I am also on a heavily restricted diet and i cant have much sodium, potassium, phospherous (as of now until my bloodwork comes back good)
i was diagnosed with it when i was 9. im now 18, i have never been in remission and i had to have a transplant when i was 15 due to so much scarring. good luck
Just want to say thank you to Bailey, Hannah and Ryan you continue to spread the word on behalf of us all and we really do appreciate it. Please let us know if you ever need our help with anything you are doing. Emma and Dylon xx (we are on your facebook)
thank you for this video...it help us with our presentation about nephrotic syndrome....btw...what is the title of this song?its really nice..thank u.....how is bailey now?hope he is fine..........
Hi, like the video, I applaud anyone raising awareness of NS. My son has had NS for 8 yrs, over 30 relapses(we've all lost count) and tried the whole list of meds, we've finally had a breakthrough following rituximab. We used to be under GOSH, the team are great! All the best for a breakthrough for you too!
Thank you hope your partner is well. Bailey comes off all his meds tomorrow 23/12/09 fingers crossed we wont see relapse number 6 hes going to see a kidney specialist from great ormond street in January hopefully they can try something that will put him in to long term remission as hes getting older its getting harder to hide it from him hes cried countless times about it this time even thinking he would die and we cant do a thing about it its so hard to have to see him go thu it every time.
My partner has NS he was diagnosed 3 years ago now, we need to raise awarness of this nasty disease especailly in the UK, we have found it very hard and lonely at times as it's still a very unknown illness. I think I'm already joined to you FB group. Keep up the fund raising and keep your chin up Bailey, well done on your walk x
I've had NS for 2 years. I was on 80 mgs of steroids for the longest time. i went into a relapse so I had to take rituxamab (light dose of chemo) which was a year ago. I've been in remission for about 6 months. :) I'm gonna find out if i have to go through treatment in a few months. Bailey is in my prayers. <3
jackiepoooo 2 months ago
@SUPERsmellySALMON i feel your pain i no its not easy i went into remission when i was about 8 diagnosed when i was 6 i know its tough but trust me if you have confidence people wont mess with ya =)
ItsMrNotorious 3 months ago
Last year they found out I had a Nephrotic Syndrome , I was 15 at that time, within 6 months it came back 3 times.. right now I have all the symptoms again, I'm 16, and this really sucks! I have to go to the hospital and stay there for like 11 days, I also lose alot of body liquid, because I gain 30 pounds everytime. I've already had a kidney biopsy, but they still can't find a solution.. they want to try other meds, but I don't want them because they have some nasty effects on you. Xx
sjoukiie 6 months ago
@sjoukiie - My daughter who is 16, just found out 4 days ago she has NS and she is so upset, honey I know what u are feeling about the meds I am having the same concerns with my daughter..It's very upsetting nothing is working for her so far..Hope u feel better..keep your head up..god bless u
BloodRain71 4 months ago
I had this disease when I was younger, really bad too, up until I was 8. Fortunately enough for me my pediatrician was good and knew right away what it was and when I relapsed he caught it again straight out :)
Only bad thing is I was on Prednisone(sp?) for that long those damn eating habbits stayed and made me fat! Haha!
Hope all is still going well xo
Jackson28383 8 months ago
only just seen all the comments under this video, add us on baileys bands on facebook where we sell cure nephrotic syndrome wrist bands or join our group help raise awareness of childhood nephrotic syndrome... your also welcome to email us at haryan@live.co.uk thank you
haryan2009 1 year ago
only just seen all the comments under this video, add us on baileys bands on facebook where we sell cure nephrotic syndrome wrist bands or join our group help raise awareness of childhood nephrotic syndrome... your also welcome to email us at haryan@live.co.uk thank you
haryan2009 1 year ago
Bailey has been in remission since 23rd -12- 2009 :0)
haryan2009 1 year ago
MY grandson has had this for 2 years and has relapsed so many time to count, Nothing works. He is only 3... We need alot of help to control it. Thank you
sonya1370 1 year ago
@sonya1370 bless him i hope you get it under control soon
haryan2009 1 year ago
I am 14 years old and i have had NS ever since I was two. I have been hospitalized like 10 times. In fact, I just got outta the hospital yesterday. I was so swelled i weighed 303 pounds when i forst arrived at the hospital last monday (December 6th) and now, thanks to my medicines (Cyclosporine and lasix) i am back down to 270.5 pounds and still losing weight. I am also on a heavily restricted diet and i cant have much sodium, potassium, phospherous (as of now until my bloodwork comes back good)
ViperVenom128 1 year ago
@ViperVenom128 also, as of now, i can only drink 1500 mL of fluid a day. i typed this as a reply because i ran out of room in my first comment.
ViperVenom128 1 year ago
i was diagnosed with it when i was 9. im now 18, i have never been in remission and i had to have a transplant when i was 15 due to so much scarring. good luck
jrobinsonful 1 year ago
Just want to say thank you to Bailey, Hannah and Ryan you continue to spread the word on behalf of us all and we really do appreciate it. Please let us know if you ever need our help with anything you are doing. Emma and Dylon xx (we are on your facebook)
sweetpea502 1 year ago
@sweetpea502 thank you emma hope dylons well x
haryan2009 1 year ago
thank you for this video...it help us with our presentation about nephrotic syndrome....btw...what is the title of this song?its really nice..thank u.....how is bailey now?hope he is fine..........
stickglue18 1 year ago
@stickglue18 Hi baileys had nearly 13 mths of remission now :0) i think the song is called if this is it
haryan2009 1 year ago
Cute video. I was bored and typed it in because i have it. :/ im 14 and just wanted to know moreee. Good lucks to Bailey and all else :D
ChibiSandKitten 1 year ago
Hi, like the video, I applaud anyone raising awareness of NS. My son has had NS for 8 yrs, over 30 relapses(we've all lost count) and tried the whole list of meds, we've finally had a breakthrough following rituximab. We used to be under GOSH, the team are great! All the best for a breakthrough for you too!
karenanneross 2 years ago 2
Thank you hope your partner is well. Bailey comes off all his meds tomorrow 23/12/09 fingers crossed we wont see relapse number 6 hes going to see a kidney specialist from great ormond street in January hopefully they can try something that will put him in to long term remission as hes getting older its getting harder to hide it from him hes cried countless times about it this time even thinking he would die and we cant do a thing about it its so hard to have to see him go thu it every time.
haryan2009 2 years ago
My partner has NS he was diagnosed 3 years ago now, we need to raise awarness of this nasty disease especailly in the UK, we have found it very hard and lonely at times as it's still a very unknown illness. I think I'm already joined to you FB group. Keep up the fund raising and keep your chin up Bailey, well done on your walk x
Jedijayc 2 years ago 2