I was diagnosed November of 2016. I'm with you and we all need each other. I'm a 56 year old aircraft technician. I thought my life was over. But it's not... And I'm here to tell you that I'm back and better than ever! I've been in remission for about 2 years and I'm still fixing airplanes. A very physical job. You're going to be okay and in your lifetime there will be a cure! I feel it! I live near the city of Boston and have one of the most amazing doctors and a leading researcher. Dr. Paul Monach Brigham and women's Medical Center Boston Massachusetts. Keep the faith!!! We are all here for you!

@abeersheikhabeersheikh8067

3 жыл бұрын

hows you know

@prabinaregmi7756

Жыл бұрын

How r u now?? Please reply

Thanks for sharing! I’m 19 and was just diagnosed with Wegeners this month. It has definitely opened my eyes to a lot of things I ‘d previously taken for granted.

Hey Im 22 and have wegeners! I was diagnosed when I was 18 (so 2014). Mine attacks my lungs and nose. It's just nice to see someone else who is young since I usually feel pretty alone about it. I look really healthy and normal too and I don't talk about it to people. You are handling it better than me because I would ignore it and skip medications sometimes. I started off on methotrexate from the beginning and now I've been off it for a year. I hated it so much because it also made me extremely nauseous. So now I'm on prednisone and getting a nose job in December. I have a saddle noise and deviated septum from wegeners before I was diagnosed. But thank you for making this. I know it was a few months ago but it was comforting.

@_yulianamoreno_5822

5 жыл бұрын

Jenna I’m glad you liked it! Method makes me feel gross and makes me throw up a lot. Lately I’ve been feeling worse than better I just hope it isn’t getting worse. Just keep smiling and take your meds but don’t let it change anything. I’m always tired and in pain but I try not to let it stop me from living my normal life because I still want to be a normal teen. But trust me we’re going to get through this fight

@I_love_readin_bl

5 жыл бұрын

WOAH REALLY. I have poly angitis toooo!!! I’m so glad where not alone!!!

@abeersheikhabeersheikh8067

3 жыл бұрын

i diagnosed this when i was 21 and had saddle nose and still have saddle nose and on prednisolone

Hello. I just watched your video and I'm so proud of you for sharing your story. I live in Sweden and I also have wegeners. I got diagnosed when I was 14 and I turn 32 on saturday. Keep fighting, you are a champ! Love from Terese

@_yulianamoreno_5822

6 жыл бұрын

Thank you so much for that beautiful message I hope everything has gotten better it’s a tough battle but we’ll get through it!

@_yulianamoreno_5822

6 жыл бұрын

HAPPY BELATED BIRTHDAYYYY!!!

@prabinaregmi7756

Жыл бұрын

How r u now?? Please reply

@rooshanna

Жыл бұрын

@@prabinaregmi7756 I'm good! Works full time job as a dental nurse. I have some pain now and then and I get my treatmeny twice a year. :)

@rooshanna

Жыл бұрын

@@_yulianamoreno_5822 Thank you!! Four years later 🤣

I just got diagnosed with this and will be praying for you 😍🙏🏼I’ve been scared about this but trusting God 🙏🏼😍blessings sweet girl you are strong 💪🏼 and a blessing 🙏🏼🙏🏼💖

Thanks for sharing your story, it was interesting to listen to! Got Wegener's myself a few years ago around the time I started college. I definitely feel you on the weight gain haha it only took a few weeks for me to go up like 35 pounds from the steroids and not being able to get out of bed. Took me two whole months of working out and not eating any carbs to fully get rid of it all. I also totally got the same "oh you might have died if we had reacted a few days later" that you got, although unfortunately it already got to my lungs at that point (and kidneys a bit) so they were a tad late haha but luckily it all turned out fine in the end. It's good to see that you came out of the situation safe, hopefully you continue to recover! Once again thanks for sharing your experience with all of us!

Hey I have wegeners too i was diagnosed when I was 11 I’m now 13 and my trachea almost collapsed and my nose bone destroyed itself it’s awesome to see someone else with wegeners bc I don’t know anybody with wegeners ❤️

Just got diagnosed this year! I’m 22, I relate to everything so so much! Thank you for sharing !

I also have Wegners!!! I FEEL SO HAPPY

@_yulianamoreno_5822

3 жыл бұрын

Hey so I’m trying to start up my KZread again and be more consistent with videos and wanted to address any questions I can answer in videos or anything y’all would love to know! Comment anything and I’ll be sure to upload a video by next week! Thank you for your support

Thank you for posting your story. My husband was just diagnosed, and he's 56. He wound up being hospitalized for 13 days with kidney failure, and had tons of tests done (ANCA positive) plus a kidney biopsy confirmed it. We knew something was wrong, but doctors misdiagnosed him. You know your body - trust what it's telling you! Prayers that you're doing well.

Hey I’m 18 and I was diagnosed with wegners at age 15. Thank you for making the video and spreading awareness.

Hello! I also have Wegener's! It's nice to see you smile and talk through this. It took me 9 months to get a diagnosis. IT all began with what looked like burst blood vessel in my eye. I had constant bloody noses. It took over 6 doctors before they got it right. After diagnosis we discovered that mine affects my eyes, nose, and throat the most. Mine was also attacking my kidneys and joints. After nearly a full year on the right meds all my symptoms faded and I got taken off of all of them. I just started taking my physical health more seriously and am focusing on an anti-inflammatory diet. Stay strong!

@piyashah6986

4 ай бұрын

Please share your diet plan

Hi! I’m 13 and was just diagnosed with Wegeners on January 7th(I was still 12). I stayed at Children’s Mercy for 15 days. Mine effected my ears nose throat and kidneys. I am currently waiting for my next Rituximab infusion and I just finished Cytoxan! I am on 15 mg of prednisone and am getting labs tomorrow to see if I can go down! Thanks for sharing your story! I will keep you in my prayers I hope everything goes well with you(especially during COVID). Stay healthy and keep fighting!❤️❤️❤️

Hey girl! I'm a med student in my second year right now studying rheumatologic diseases. I'm super grateful that you shared your experience with Wegener. Hope you're doing well!

Just got diagnosed with, glad I found your video

I just got diagnosed in October of 2020. I was really scared about it but my rhem got me through. I'm thirteen and almost died twice last year in the matter of weeks. PICU was the worst part for me. Thanks for sharing your story even though this happened awhile ago.

I was just diagnosed with Wegener's Granulomatosis in November of 2020. It affected my nose, lungs and kidneys. I hope you do more videos.

Thank you for sharing….there’s very little content like this from young ppl. Makes me not feel so alone

thank you for sharing your story, my little brother hes 12 was just diagnosed today :/ reading as much as i can.

I was 14 when i was diagnosed. Im 37 now and currently in a flare. ❤

@lifeisagiftfromgod8653

7 ай бұрын

can i have your contact number please i want ask about this?

Hey, how are you doing today? I love that you have such a good attitude about your diagnosis. I am suffering from an undiagnosed illness and i think that it’s either sarcoidosis or Wegener’s.

Thank you!

I have many conditions one of which is Behçet’s disease, also a type of autoimmune Vasculitis. I got ill two years ago age 14 and I was provisionally diagnosed with HSP! so we seem to be similar in many ways!

Please make an update video! I am invested, I hope you’re doing well.Let us know about the progression of ur disease…

I am on a deep dive obsessive journey into the spiritual world and iam willing to do what must be done to give my boy the choice to get stronger mentally and I will find a way to raise awareness this year

Hey I just recently got diagnosed with wegners granulomatosis the same thing you have that’s Vasculitis :/ I’m currently doing fine but I’m taking medicine because it’s affected my kidneys and I have to do hemo dialysis 3 times a week but it’s all leading me in the right direction and just know this video really helped me feel not alone !

@romowasbetterthanaikman3932

Жыл бұрын

Hi. I was diagnosed a few months ago with kidney involvement. I’m currently doing dialysis 3X a week. I finished Rutuxin about a month ago. Doctors aren’t painting me an optimistic picture as far as regaining independent kidney function. Looking for any advice from people who have gone through this. Any thoughts would be helpful.

I love u ,u will get through this I love u

I was diagnosed in 2019 with Wegeners and Goodpastures syndromes. Wegeners alone is rare but it's even rarer to have Goodpastures with it. Within a matter of just a couple of months my kidneys went from 100% down to 40%. I developed a benign tumor in my lung and had to have my right middle lobe removed. Then after that I started bleeding from my nose and coughing up blood. I was so tired. Couldn't walk, kept getting headaches, purple lumps and red spots on my limbs. I constantly pushed my Dr to find out what was wrong with me. I thought I was crazy. But finally I ended up in the hospital and they figured it out. I was close to complete kidney failure by then. I had to have plasmapheresis treatments and I spent a month in the hospital. I am finally feeling pretty good now after all that time. I am on Azathioprine once a day. I am scared to go off it in case the vasculitis comes back. My kidneys will never be 100% again but I live as best I can. Trying to eat a healthy diet. Staying active. It's hard for people to understand that you may look awesome but your insides are a complete mess. I constantly have to remind people that I just can't do the things I used to. My husband is completely understanding and knows that when I don't feel well I need to just rest and sleep but some of my friends just don't get it. I am 62 now and was diagnosed at age 59. It's a tough road to travel but if you have good medical, family and friend support you can beat this disease. The key is early, vigorous treatment. Keep on your Doctors. Advocate for yourself or get someone you trust to advocate for you. You are so young and beautiful. You have so much life to live. I wish you all the very best for a long, healthy and wonderful life.

Thank you for this video. I am being tested for this now and I am so afraid.

@_yulianamoreno_5822

5 жыл бұрын

KMia Johnson DONT BE you got this

@Maddognfreddy

5 жыл бұрын

_yulianamoreno_ thank you! I pray you are well!

Thanks for doing your videos this is the first time I saw yours, Got mine when I was 47, I never have energy At any given time any part of my body gets hit with severe pain. I have to force myself to do anything, it's not easy people think if you look good you're well. I've been through the whole treatment chemotherapy,steroids and even lost my white blood cells If you stop eating for a day or 2 get checked out quickly at the ER for loss of white blood cells?

Hope Rob from threadbangers’ channel finds your channel he was just diagnosed with this.

Thank you for making this video. I too have Wegener’s. It’s awful. I’ve never heard of it affecting the pelvic area. Can you give more information on that?

@_yulianamoreno_5822

6 жыл бұрын

I never said it affected my pelvic, my pelvic was just hurting me and they didn’t think it was because of the Wegeners but they wanted to make sure I was okay that’s why I had the ultrasound done. Sorry for not specifying. How long have you had Wegeners for?

@aminarobinson1033

5 жыл бұрын

I just was diagnosed today my hands are shaking I’m afraid . I don’t know how you fight something that’s attaching your entire body

@aminarobinson1033

5 жыл бұрын

Thank you sweetheart I’m praying for you and me . I hope my anxiety just cools down.

@aminarobinson1033

5 жыл бұрын

Yes it has I been just working out trying to eat better take the meds and prayer . I go to my lung specialist to make sure my lungs are good . My kidneys are in good shape so I’m a lot calmer now prayers for you .

Rob from Threadbangers just got diagnosed with this.

You look so healthy tho! 😋 I can relate to that. I live surrounded by hard workers and they all think I'm a lazy.... I used to love my job but I had so many days where I had to sit down every twenty minutes to rest my weary bones that I started to hate the thought of work. You feel so guilty but I've managed to get over that to a degree. You should be on a drug called rituximab. You get it once a year or as required. If you get a relapse it may not be as easily treated so you are supposed to stay on methotrexate for life but I stopped taking mine in case that was what was making me feel bad but it wasn't the cause.

I'm afraid that I have this... I'm seeing my rheumatologist in 2 weeks. I already have SLE, was diagnosed in 2018. I am freaking out.

do you habe period cycle or menopause becaude of prednisolone?

I'm also on Methotrexate and 60mg of prednisone and i am also on 2 diabetic drugs

I was born with low vision and I am shocked how fast I have already just pretty much gave up on being my littles girl caretaker and right before the COVID stay home order My SON got a behind the Eye tumor removed and then after 2 weeks and going to 6 different doctors. His Diagnosis was this rare disease… My question is for all of you guys to give me you personal recommendation to do exactly what he needs Emotionally speaking.

Lol I spelled together wrong

Hello. I have been diagnosed in this January, I feel like I can't live anymore. I am depressed. Please help. Please reply.

I understand the struggle with wagners i too had to change my life as well i get sick real quick i dont wish wagners on any one and it has relapsed 4 times wirh me just 2 years ago it relapsed to the max witch my kidney doc is suprised im still breathing

@_yulianamoreno_5822

6 жыл бұрын

I’ve had Wegeners for almost 2 years now apparently I was misdiagnosed at first so far I just get lots of bruising and I get sick quickly as well it is horrible I wish people understood because sometimes it’s hard to express what I feel

@_yulianamoreno_5822

6 жыл бұрын

Felix Baros Im glad you still are and hopefully nothing worse ever happens this sickness... just... we need a cure ASAP

@felix2083

6 жыл бұрын

Right ive had this illness for 10 years now im doing kemo twice a year for the rest of my life

@ivetteamezcua9944

6 жыл бұрын

Felix Baros is your chemo Retuximub?

@felix2083

6 жыл бұрын

Ivette Desantiago ya

I was 18 when i was diagnosed btw

Hey I was Just diagnosed with Wagner's Mine is bad sores all over my legs but you do know it is genetic i also have Lupus.

Hi everyone been looking at all this information everyone is putting out there from this disease I’m also a Wagner’s patient I was diagnosed in 2013 Stanford Medical Center in North Dakota ‘ I was put on all sorts of meds for 6 months and yes I also experience my hair falling my eyes turning red disfigured from my face from prednisone ‘ I agree to try CBD “” god’s will “ am doing good been off meds I do have knees pain bcz am a very energetic person won’t stay still but someone really needs to look more into CBD for Wagner‘s patients thank you have a bless Day

How are you now?

My friend died from this at 24😢

I was diagnoses with wageners but the way the docters found out is diffrent from yours and i think mine is more serious then yours im in stage 3 of wagners

@_yulianamoreno_5822

6 жыл бұрын

Felix Baros oh wow Im so sorry i truly hope you’re okay I’m at a pretty medium stage and I know with that I feel horrible. Although Wegeners is different for everyone so maybe we just have different things going on

@abeersheikhabeersheikh8067

4 жыл бұрын

Do you lost your cartilage of nose and have had a saddle nose...I was also a patient of Wegener with saddle nose😓 8 have no period at all since taking prednisolone steroids since 2012....Do you have your menstrual cycle or not?

Im 28 now

@_yulianamoreno_5822

6 жыл бұрын

Felix Baros just keep being strong hopefully there’s something soon

Btw it’s ava

I love you❤️

are you able to live a normal life? hope all is well.

Hlw sis... How r u now??please reply me.. Please

@_yulianamoreno_5822

Жыл бұрын

Hi. I’ve been okay a lot better but last year I was in the hospital almost every month. I was having a lot of stomach issues (unrelated to wegeners) and I had to get a plasma transfusion due to my body somehow shutting down and me not being able to walk. But honestly it’s been getting better slowly.

@prabinaregmi7756

Жыл бұрын

@@_yulianamoreno_5822 Gud to hear sis... Stay blessed.. Love from Nepal...

It’s Wegeners not wagners