A New Future for Rare Kidney Disease: One Teen's Journey with FSGS
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- Опубликовано: 15 июл 2024
- Meet Joshua Albright. A happy and seemingly-healthy 17-year-old who had just graduated from high school, and on his way to college-his whole life ahead of him. By pure chance, Joshua and his mother had discovered he was in the midst of a high blood pressure crisis. Despite wanting to hang out with his friends, she sent Joshua straight to the ER.
What happens next is NephCure's hope for the future of everyone living with rare kidney disease:
Joshua was immediately diagnosed with a rare and rapidly progressive kidney disease: FSGS. With his doctor’s encouragement, he was able to quickly join a clinical trial studying a new potential treatment for his condition. “If it can help me, why not try,” he said.
Since joining the trial, Joshua’s kidney health has stabilized and he’s feeling better. His doctor-and all of us at NephCure-are hopeful that this medicine can help others as well.
We are likely only weeks away from one of the first-ever FDA-approved treatments for IgAN, a rare form of kidney disease. This same drug is also being studied in FSGS patients and could be approved as early as next year!
We are here because of you, our donors and supporters - thank you.
We have not crossed the finish line just yet, but in fact, entering the next phase of our fight. The new challenge we face: ensuring all patients can access these new and better treatments in time to save their kidneys.
To get these treatments into the hands of those who need them most - all while continuing to provide robust educational programming and support to help guide patients through their disease journey - we need your support now more than ever.
Can you help patients like Joshua, and ensure new medicines reach rare kidney disease patients in time to save their kidneys? Donate today at give.nephcure.org.
For more information and resources, visit nephcure.org. 
Развлечения
I remember back when I was diagnosed with FSGS at 20.. There were no clinical trials going on. No medication what so ever. This was 16 years ago. I ended up having a kidney Transplant at 30.. 6 years ago. This video makes me smile. Year after year I was giving blood, urine and paperwork for there to be more studies. I still do it so our future generations could find a cure and medication. Its scary to find out you have something so rare. Really messes with your mental health. Everything works out well. Im 36 and thriving!! Keep it up kid! You will be ok and life a beautiful long life.
I was just diagnosed with FSGS at 23. Changed everything for me but I am accepting it and on my 4th week of Prednisone. Got so much I want to do in this life and I won’t be stopped by this disease.
I’ve been living with FSGS for 10 years now and I am looking to learn more about anyone that has FSGS and pregnant
prada u brudda ❤
Dejuan’s, Thank you for participating in the video and being such a good friend to Joshua. (❤his mom)
fsgs warrior here, I’m 24. I was diagnosed at 18. It’s insane not knowing what’s going on and why (mine isn’t genetic) But, I’m hopeful for you and the rest of us going through this. It really messes with our mental health but always keep your head up!
I’m 34 and have been battling it for a few years. I recently traveled to Tijuana for stem cells and it’s changed my life. I wish more doctors would recommend this and approve it in the us for ckd and FSGS
Just got diagnosed AT 18 too. Are you still in treatment ?
@@jla7171my daughter is 10 and just got diagnosed couple days ago with this disease 😞 where in Tijuana I’m interested anything to help I’ll try
Thank you ❤ please put a trimmed version on tiktok to help spread awareness
Thanks for sharing. My original kidneys lasted 6 years from when my FSGS was diagnosed. I was on peritoneal dialysis for three months, then I got a transplant from an altruistic donor which was amazing. I had a lot of plasma therapy sessions to try and keep the kidney alive. Unfortunately this kidney only lasted nine months because the FSGS was so aggressive. I then went back on dialysis for two years. I got a second kidney transplant, again I had a lot of plasma therapy (over 100 sessions) and multiple courses of rituximab. This kidney lasted two years and has just died. I am now back on haemodialysis. My doctor has said there is a very high chance my third kidney will be attacked in the same way by the FSGS. I hope your transplant lasts a lot longer than mine have.
Look into stem cell treatment, I too have FSGS and stem cells have changed my life.
@@jla7171can you please elaborate about stem cells treatment please 🙏🏻🥺
God bless you stem cell transplant are being doing at stanford praying they find a less harsh way to change the immune system with stem cells
@@jla7171 please explain
Inspirational. Thank you
❤❤❤
My son has been diagnosed with this. What meds are you on can share
How old is your son? My daughter just got diagnosed she’s 10 😢
@@neriskaren my son is 16
They want to remove both my daughters kidneys then give her a transplant i eant stem cells first but they wont consider it yet unless she has a failed transplant first smh