I Have a Rare Kidney Disease | IgA Nephropathy

I recently got diagnosed with a rare kidney disease called IgA Nephropathy and wanted to share my journey (so far) and how I've been feeling since the diagnosis. Below are some links to learn more about IgAN (or you may hear it referred to as Berger's Disease):

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#kidneydisease #IgAN #CKD

[amypelster]

I was diagnosed in 2002, or thereabouts when I was in my early thirties. I had blood pressure meds and fish oil prescribed. The fish oil was only for about two years. My condition slowly kept decreasing kidney function. I started having gout attacks in my big toe. Excruciating. A prescription kept that at bay. Eventually my levels dropped low enough to get me on the transplant list. I felt pretty good. I have had a transplant for 5 years and still feel great. My surgery was preemptive so I did not go on dialysis. When I was being wheeled in for surgery, it was surreal because I felt fine, but knew my condition was not good. So far, so good. I wish the best for you! I always saw my diagnosis as fortunate, because a “no known cause, no known cure” disease could have been something that was guaranteed fatal. At least with kidneys, there is hope even with organ failure. 70 years ago kidney failure was fatal. So, be grateful for those who have worked to get this as far out as they have.

[murtamuustafa]

You are not alone me to i was diagnosed this year with iga nephropathy stage one...God pleased you all

[alonzini]

I can really relate with what you’re going through.. I also have a chronic disease, I really get the “freaking out” phase you mentioned, it’s tough. Having to take medication for the rest of our lives is tough. I hope you will find peace with it and keep on living great and healthy and happy life🙌🏼

[csBANANASPLITZ]

I was diagnosed last year at 35 and was lucky to have caught it early like you. It's kind of crazy to hear you explain what you felt (all the way down to the facebook groups) and makes me feel so much better knowing none of us are alone in this. I'm feeling better about it lately and I hope you are too - In a way it feels like a blessing to understand how important our health is and to make the most out of the life we are given.

[Dr.Faroha]

You are such a kind soul, I actually watched this video because i’m a 2nd year medical student from Saudi Arabia & we’re studying this condition, so i really wanted to hear someone who has it talks about it. You’re such a strong woman & you genuinely have a beautiful soul, i’m so glad I watched this video, may your life blooms & all your wishes come true

[chadandwendy]

I'll be 2 months behind by the time blood work comes. Doc is booked for almost 3 months. Thanks for the reminder. 🎗️

[marianfraser]

You got this. You're taking it head-on, getting educated, and doing whatever it is you're going to need to do. And you won't be alone. Big hugs and lots of love!!

[joerock]

I’ve had it since 2011, confirmed by Biopsy in 2018. My kidney function/EGFR hovers between 50-50 percent. Try to live your live as best as you can and remain healthy. God Bless.

[willthomas]

Just coming up on this video because i had much the same experience. Jan 2022 I was in the ER and they found blood and protein in urine. Didnt really follow up on it because i was dealing with other issues. Fast forward to August this year i am in the ER again and the protein and blood is still there. Went to urologist and got the CT scan as well as cystoscopy. With nothing found they sent me to Nephrology. Came back after the kidney biopsy and lab work and they gave me the IgA Nephropathy diagnosis. Its been a rollercoaster of a ride in the week since then. Wishing you the best.

[manuelrosa]

I have exactly the same kidney disease. I had a transplant in 2010 and was lucky to have my awesome sister that donated her kidney to me. I feel great, basically I feel completely normal. Besides the fact that I have to take anti rejection medication for the rest of my life and do bloodwork every 3 months I do everything a normal person does. I’m an avid cyclist and this disease thankfully hasn’t stopped my passion.

[kcinad]

I just found your channel from videos you have done in the past. Seeing this as your latest video left shocked. Ig I just wanted to leave a message to say that I watched this till the end and like everyone I pray for your well being! Have A Nice Life!

[RandomGuy-prgt]

Laura my wife has the exact same issue. You are not alone. There are medications as well speak that can reduce the progression. If you are in the early stages of this, this is going to be 15 years minimum to get to a stage of concern or dialysis. You need to consult doctors frequently and make sure you are taking the recommended diet asked by the doctor

[Laurilue]

I was just diagnosed with IgAN the day before Thanksgiving. I’m 51. I’m so glad that you found out so much sooner than I did. That’s a blessing. I’ve had multiple kidney infections without ever having a single UTI for over a decade and nobody could tell me why. Surprise! But yeah, it is so much to process, and I am still processing. Be kind to yourself. This is hard. 💕

[lizamarie]

I was diagnosed with IgAN in 2013 (age 23) but had protein and blood in my urine since 2006 (age 16.) In 2015 I adopted a plant-based diet and my labs dramatically improved. Even now, 12 years after my diagnosis and 19 years since symptom onset, I'm thankfully still stage 1 of CKD, with 100% kidney function, and I haven't ever been put on medication for the IgAN. I highly recommend a plant-based diet and now even nephrologists are as well!

[denisel.villegas]

Thank you for sharing your story. I can relate as I was just diagnosed this past week and am still processing what this means and how it will impact my life.

[JeriahGibb]

I was diagnosed with IgA Nephropathy last year, at just 18 years old. The only reason they caught it this early was because I got the flu, and it triggered a severe IgAN episode. After an extended hospital stay, three ultrasounds, a horrendous amount of lab work, two biopsies, and a CT scan, they finally made the diagnosis. Thanks for the video, it’s comforting to see others that struggle with the same thing😅

[WB-zrpq]

I've had it since 1998, body fully tries to shut down went I get something viral. Only recently after a Covid spike did my gfr get way worse and hits stage 3a and had to start BP meds. I was able to maintain for along time due "clean" living but its also luck I swear. I'm sad to see this rare disease is happening more. I'm 43 at this point and don't plan on slowing down even if odds say 24 years at stage 3.. its all about fighting the inflammation (and staying away form things that cause it) and buying time staying as healthy as possible till better treatments come along. We got three new drugs now, tarpeyo got fda approve. Artificial kidney is coming along a ton too. Good luck on your journey!

[Nickel]

I ask God to grant you guidance and patience ❤ I’ve only ever seen your barefoot shoe reviews and your videos were instrumental for me in making the switch over! Clearly you’re an incredibly brave/ conscientious youtuber in sharing this. Glad your getting support from your love ones 🙌🏾

[TheSUPERHAPPY]

I have an auto immune syndrome that I was diagnosed with at 16. On medication for life.
For me, it makes me really not want to get any new health issues.
I don't want diabetes, I want to prevent everything that I can.
1 healh issue is enough for me.

Thank you for sharing your experience

[ginaeickmann]

I was diagnosed with Iga neuropathy 40 years ago. The only symptom I have had is microscopic blood in my urine.