I thought it was hilarious 'the extreme pain and misery..' and the music going in the background like it's a party. About as compassionate as brick to the face. It may well intentioned but it is a massive insult.
It is comforting in a way to know I’m not the only one. It’s very easy to feel alone and can be very painful emotionally/physically. The biggest advice I would give is to have a strong support system. If family or friends are treating you like you’re a hypochondriac because they don’t witness all of the infusions or medications or suffering, then distance yourself from the negativity and surround yourself with the loving/caring people. It really helps to have loved ones support..
I know exactly how you feel and I have no support group, but on the positive side I laughed my head off as these poor people talked about their pain to such happy joyous music, it's almost like watching a slasher horror film and whilst Jason's chopping up - this comes on 'are you having a good time?' He says as her arm is dismembered. It's totally nuts. Take care.
Music is over-powering the message...Sadly.....fix if you can! On an extremely positive note, my husband and I just completed attending our first Vasculitis Foundation Symposium in Minneapolis, MN and it was an incredible experience. After being diagnosed with Vasculitis Nov. 30, 2018, my life has changed dramatically and at the Symposium I was able to meet many others with this rare disease and get assess to medical experts who work daily to treat, research and combat this illness that so few know about. It gave us hope, encouragement and knowledge that we will use to better our lives each day. Can not say enough about how professional and empowering the Vasulitis Foundation is.
Try attending the Vasculitis Foundation Symposium next year if you can and connect with this fine organization ASAP. While you are rare, you are not alone and that alone is empowering!
it took me 7 or 8 years to get a diagnosis and by that time a lot of irreversible damage had been done. Whats even more frustrating is I was with a doctor who in hindsight, really didn't care. He said the inflammation in my trachea was nothing to worry about. Bitch it was vasculitis what the fuck you mean its nothing to worry about I BEEN CHOKING IN MY SLEEP, DOC. But hey I'm with good doctors now but like... i can't believe how uncaring the others were.
If you are researching this, I think the vasculitis 'flares' are caused by mental stress and also not enough sleep, and those two things (of course), go hand in hand. Also, hot weather and getting overheated. I hope these observations help someone.
This is an important video. It should be an easy thing to take down and copy this video, tone down the music and then repost it back to RUclips. At the moment it is nearly unwatchable. Once again, it is a great and important video.
My mom was diagnosed with Vasculitis 5 months ago and died 2 weeks ago 😔 she was in so much pain, and she was hospitalized more than 7 times in just 5 months. It was so hard watching her quickly fade away. I don't know if the disease itself killed her, or the medicines she was taking for it made her immune system too weak to fight infections that killed her.
@@jorgefierro3096 thank you! This brings back very sad memories. I was consumed with reading and watching about my mom's diagnosis. I'm past that, but my sadness about her passing is only growing.
Excellent video, especially the gal who shared about the isolation and with gal who shared about the feeling of vulnerability! I would turn down background music.....it does overpower!
Thanks to all for sharing in this video! I have gpa/wegeners . this video is so helpful. just knowing others are feeling & dealing with same issue's with this difficult disease helps me not feel so alone in this fight. Ty
We are so glad you found this helpful. If you have not already spent some time on our website, you will find that it contains lots of helpful resources for people who are newly diagnosed. www.vasculitisfoundation.org/newly-diagnosed/
Thank you for this post. I too have vasculitis like everyone with it my journey has been difficult. I have ANCA vasculitis with marked difficulty ambulating. I agree that reduce is the key. The emotional side of this diagnosis has been difficult because some family members think I don’t do enoug. Your post shows me I’m not alone with this diagnosis
You are definitely not alone! Dealing with the emotional side of vasculitis and being misunderstood by others can be difficult. I wanted to share some resources that may be helpful. 1. Vasculitis Foundation support groups: We offer weekly and monthly virtual support groups where you can connect with others who are living with vasculitis www.vasculitisfoundation.org/living-well/find-support/ 2. Find more information on ANCA vasculitis on our website: www.vasculitisfoundation.org/education/vasculitis-types/ 3. This webinar on the grief associated with a vasculitis diagnosis is excellent ruclips.net/video/1l6FsokdlXQ/видео.html 4. Our Navigating Your Vasculitis Journey guidebook can be very helpful in dealing with the emotional side of the diagnosis. You can find that guidebook and other mental health resources here www.vasculitisfoundation.org/living-well/mental-wellness/
The music is downright nonchalant and frivolous. The topic is serious, folks. Who in the WORLD foolishly chose this music? Obviously, it's someone who doesn't believe scientific communication is effective, someone who would tell someone not to scrub his hands for 20 seconds but to do so while singing "Happy Birthday" twice.
That is a lot to be dealing with. The Vasculitis Foundation has many helpful resources. You can reach out to our patient support coordinator using this form www.vasculitisfoundation.org/about/contact-2/ or join one of our virtual support groups www.vasculitisfoundation.org/virtual-support-meetings/
Sorry ,but I had to abandone this video. These lovely people had important things to say about their condition , but were drowned out by the totally inappropriate music for such a serious subject !!! It diminishes the message
This makes me feel so must better about having this. I was diagnosed with Leukocytoclastic vasculitis at age 13 and bechets disease at 18. I’m 24 now and a mother and a wife.it sucks but the lord heals my body of a lot !
Living with vasculitis, especially Behcet's disease, can definitely be challenging. We are so glad this video brightened your day. We have a ton of resources, including information about virtual support groups, research opportunities (including a pregnancy registry that helps us gather information that will help other women with vasculitis who want to have families) and more on our website www.vasculitisfoundation.org
my sis was diagnosed with hypersensitivity vasculitis in 2007 and had to retire from work early. she takes prescribed anti-inflammatory and steroid pills regularly. her feet still feel numb with joint pains up to now although the flares stopped when she left work.
I was told four months ago I have vasculitis and my doctor didn't know how to treat it and instead refused to write a referral for another doctor to help me I can't even walk anymore.i been posting my videos hoping for help. Please if anyone knows how I can get help reply or message me I beg you
Some types of vasculitis have blood clots and rashes as one of the symptoms. There are also other diseases that have these symptoms. We'd recommend you see a rheumatologist if you suspect vasculitis. You can find out more about vasculitis on our website www.vasculitisfoundation.org
By the way there is 20 different forms of vasculitis that effects different parts of the body MY CNS Vasculitis is one of the rarest forms effects my brain and spinal column.
Thanks for educating people about one of the rarer forms of an already rare disease. If you are not already familiar with the vasculitis foundation you may find additional helpful resources on our website www.vasculitisfoundation.org
How does one get diagnosed ?! It’s so frustrating when Kaiser , yup I said it , does not know what to look for and all signs are pointing to vascultis, and even with a team of docs , they play a waiting game..pls share with me who to go to for the next step and accuracy in diagnosing ?! This music ! Omg take it off pls ! This is a serious video!
You should be seeing a rheumatologist if you are not already. It can be very frustrating. There are other diseases that have many of the same symptoms as vasculitis so often doctors have to do a lot of testing and looking at all of the other possibilities before they can make a diagnosis of vasculitis. Unfortunately, at this time, there is not a test that can definitively diagnosis vasculitis. Instead doctors look at a variety of test results and your signs and symptoms to help them make the diagnosis. Here are some additional resources you may find helpful in ensuring you receive a timely and accurate diagnosis. Find a Doctor: www.vasculitisfoundation.org/find-a-doctor/ American College of Rheumatology Guidelines for diagnosis and treatment: www.vasculitisfoundation.org/2021-acr-vf-vasculitis-guidelines/
I was just diagnosed with leukocytoclastic vasculitis in June,2019. It’s so early in my diagnosis that I don’t have a cause yet. I have had many health problems over the past 12 years, so now I am wondering if a lot of them are symptoms of vasculitis. For the past three months or so, my legs have been covered in sores and I also have them on my arm, face and chest. They are extremely painful! I have been getting these sores now for several years, but have never known what they are until last month when my doctor did a couple biopsies. I have a lot to learn about this disease, but I really do want to know more. Thank you for this video.
I was also recently diagnosed with leuko vas, after experiencing what I thought was heat rash or hives, contained on my lower legs. It would totally disappear after 4-5 days and not show up again for many months, so it wasn't that big a deal until the last outbreak. It started 3 months ago, and instead of going away after several days, it has gotten progressively worse - not one day of respite. It has traveled up my body, torso and arms. The swelling of my feet and ankles, the fire itching, pain in joints... and on, and on...... Aye Carumba!!!! Former military, athletic, healthy eater, etc., Why is this happening? Is there a support group I can join? Thanks! Cheers for 2020!!
I have a friend with this, she has had lots of flare ups. Usually on the feet and legs, not able to wear shoes or walk because of the blisters. She is constantly on steroids and has an infusion of biological medicine at the hospital. Are there any food related studies that support certain types of which would help my friend?
I was also diagnosed lecocytoclastic vasculitis since 2018 , which flare up by sitting or standing for an hour .I got them on legs ,arms even on ears . Now am not taking any medicine .These purpura rashes come and go away in a week and rashes comes . This cycle goes on .
IAM trying to feel this sickness in it's being. My son is presently dealing with this and it is very hurting for me to know that he has to endure this. He is such an outstanding go for it father and living son. 8 pray that there is something to help him and free him from so much pain in everyway possible. I feel so afraid just from actually reading about it today. I had never hear the word And it is a really frightening illness So to my child and everyone dealing with this please know someone cares and with care come prayers. It's so hard and all we can do is try being there for each . I love u my son.
As may have noticed, you are not the only one who feels that way about the music. We have definitely taken everyone's comments to heart in later video productions. We leave the video up, even with the annoying music (which we cannot remove unfortunately) because, as you said, the information is helpful. : )
We are so sorry to hear this. We hope you are getting the treatment you need. You can find more information about vasculitis, including information about our virtual support groups, on our website www.vasculitisfoundation.org
It is an auto-immune disease where a person's immune system mistakenly attacks veins and arteries in their body causing inflammation. This inflammation damages the veins and arteries and can impact blood flow to organs causing organ damage. Depending on what veins and arteries are impacted and how quickly someone is diagnosed and treated, vasculitis can be life threatening.
What is causing it I never knew anyone when I was growing up with anything like this disease my sister has. Just been diagnosed with it I do not believe in everything is autoimmune all of a sudden lots of people have it .
As with many diseases that you are suddenly hearing more about, we are not sure if there is an increase in cases-or just an increase in awareness and therefore an increase in diagnoses. With accurate diagnosis, and proper treatment people with vasculitis are living longer (most now have a normal life expectancy) and that could also explain what seems like an "increase" in vasculitis. However, there may also be an increase in the number of cases of vasculitis. In the past, there was not a good way to accurately track these numbers-but that has changed and over the next few years we will be able to get a clearer picture.
I just found out I got vasculitus red patches here and there all over my legs painful swollen legs tingly and numbness muscles hurting to the point I couldn’t move cause I was stiff to get up 😢
We are sorry to hear about the symptoms you are experiencing, but glad you have a diagnosis that will guide your treatment plan. We have many resources on our website such as treatment guidelines, virtual support groups, and educational webinars that you may find helpful. Our website is www.vasculitisfoundation.org. This landing page will guide you to sections that may be especially helpful for someone who is newly diagnosed www.vasculitisfoundation.org/newly-diagnosed/
A year ago today and for about two months I had no memory of anything! My wife was really going into a panic mode called her son in Canton , Ohio and he said take him to OUSH, he drive from Canton to near Zanesville and drove us to OSUH in Columbus I was admitted 16 Jun 2022, found to have swelling if my brain and spinal chord, severe malnutrition, memory loss. They really had no idea as what was wrong with me! MRIs, CAT scans, 4 spinal taps all non conclusive, was there till 3 Jul. 2022. They stabilized me and was discharged. Well about a month latter a few blood clots put me into the local hospital for a overnighter. My Neurologist at ODU said we are going to find out what's going on. A three hour MRI, a Brain angiogram, both were inconclusive so the final test was done the brain biopsy conformed CNS Vasculitis. Oooo, ok no, finally, but then only two in a million get it and there is no cure! Oh man! well was told we can try to treat it not cure it. So CHEMO here we come well surprisingly I didn 't have my dreams come true about tying a puke bucket around my neck! Felt like I got run over, very tired, grouchy, moody but made it through it . During my CHMO I was hit with COVID which is not good with a weakened immune system. Shrugged it off amazing for a 70 year old! So up and about now about a year latter , have occasional headaches make me wonder if a stroke is in progress, memory is not up to par, patience, and mood swings take place. Filed with the VA for AGENT ORANGE induced CNC VASCULITIS and was evaluated by a Nurse Practioner of Veterans Evaluation Services (that only rates a 1 by the BBB of Texas) in the evaluator's credential it says "Medical Experience in Years:0 SAY WHAT I have CNS that most doctors never heard of and evaluated by this? VA denied my Disability did not even consider the opinion of my Physician that they paid for my care! I am a neuroimmunologist physician scientist who specializes in CNS inflammatory disorders. In my review of the literature there are several publications that indicate that herbicide exposure can contribute to vasculitic inflammation and activate lymphocytes. The VA takes the word of a PN with no YEARS of Medical Experience over . Assistant Professor of Neurology Department of Neurology The Ohio State University The VA WAY DENEY UNTILL THE VET DIES!
I have anca vasculitis. i'm not a god damn fighter, i'm a punching bag. i'm only here because i didn't die yet lmao. yeah juggling life with vascilitis is hard as hell and down right impossible at times. that doesn't make me pushing through it STRONG it makes me exhausted and tired of living. the music on this is shit.
We appreciate your feedback and we've heard you, and others who have made similar comments, loud and clear. Unfortunately, with the way this video was produced we can't edit out the music, but we will be sharing a new "One thing I wish people knew about vasculitis" video soon and have made sure the music is not intrusive.
I got it after quitting smoking for a year. It was one of the things I suspected. I noticed improvement after starting back smoking. It definitely didn't effect it
ABSOLUTELY DISGUSTING CHOICE OF MUSIC. I laughed at first at how ridiculous the choice was, but then when I read the comments and about the death of loved ones, and heard the fear in the people's words in the video I came to the conclusion you are being offensive. I came here for comfort and you insulted all of us.
I have LCV and I wish more medical care facilities understood this disease. I was diagnosed in 2007 and have chronic breakouts. I’ve not had medication since 2009. Take only Aleve and now I’m nursing a 9 month old leg wound from an initial breakout that was scratched while I slept. I’m so tired all the time. Thank you for showing these others who totally get the same things I feel.
Hope things are improving for you. My friend gets pupera on her feet and legs. These as you know are so painful and can get infected. This last year has been very difficult with continuous flare ups. She can walk most of the time as she csnt wear shoes. My friend has Lucoskylastic vasculitis.
@@insafyousaf Steroids are the first meds that are given. I think initally they help but the longer the desease progresses it can be hard to treat. Currently my friend is being given a chemotherapy drug.
One thing I wish people knew about vasculitus was that this music didn't suit a video about a debilitating sometimes fatal life ruining disease
Probably to be upbeat and not sorrow
So true. Really annoying.
To whole family.
Yes! Bad choice! It sounds like ‘Breezing Through Bavaria’!
I thought it was hilarious 'the extreme pain and misery..' and the music going in the background like it's a party. About as compassionate as brick to the face.
It may well intentioned but it is a massive insult.
It is comforting in a way to know I’m not the only one. It’s very easy to feel alone and can be very painful emotionally/physically. The biggest advice I would give is to have a strong support system. If family or friends are treating you like you’re a hypochondriac because they don’t witness all of the infusions or medications or suffering, then distance yourself from the negativity and surround yourself with the loving/caring people. It really helps to have loved ones support..
I know exactly how you feel and I have no support group, but on the positive side I laughed my head off as these poor people talked about their pain to such happy joyous music, it's almost like watching a slasher horror film and whilst Jason's chopping up - this comes on 'are you having a good time?' He says as her arm is dismembered.
It's totally nuts.
Take care.
Music is over-powering the message...Sadly.....fix if you can! On an extremely positive note, my husband and I just completed attending our first Vasculitis Foundation Symposium in Minneapolis, MN and it was an incredible experience. After being diagnosed with Vasculitis Nov. 30, 2018, my life has changed dramatically and at the Symposium I was able to meet many others with this rare disease and get assess to medical experts who work daily to treat, research and combat this illness that so few know about. It gave us hope, encouragement and knowledge that we will use to better our lives each day. Can not say enough about how professional and empowering the Vasulitis Foundation is.
Thank you. I'm crying as I watch this. It's hard.. But good to know there's people out there who understand me.
Try attending the Vasculitis Foundation Symposium next year if you can and connect with this fine organization ASAP. While you are rare, you are not alone and that alone is empowering!
IM CRYING 2 😭😭
The music is overpowering the messages. Otherwise a great video, sums it up well. Thank you!
Leonie Biddle exactly, is the happy music supposed to have me forget vasculitis.
Totally agree…
I was diagnosed April 2018. It took over 10 years....
It is only by the will of what ever is most holy that I am still alive today.
great thanks god....happy for you can I know which type of vasculitis you have and where you diagnised it...
it took me 7 or 8 years to get a diagnosis and by that time a lot of irreversible damage had been done. Whats even more frustrating is I was with a doctor who in hindsight, really didn't care. He said the inflammation in my trachea was nothing to worry about. Bitch it was vasculitis what the fuck you mean its nothing to worry about I BEEN CHOKING IN MY SLEEP, DOC. But hey I'm with good doctors now but like... i can't believe how uncaring the others were.
How r u now @snide coren..
If you are researching this, I think the vasculitis 'flares' are caused by mental stress and also not enough sleep, and those two things (of course), go hand in hand. Also, hot weather and getting overheated. I hope these observations help someone.
I agree
You are right mine do flare up with stress
*Extreme weather+stress
Thank you..this is very true, I'm newly diagnosed.
This is an important video. It should be an easy thing to take down and copy this video, tone down the music and then repost it back to RUclips. At the moment it is nearly unwatchable. Once again, it is a great and important video.
My mom was diagnosed with Vasculitis 5 months ago and died 2 weeks ago 😔 she was in so much pain, and she was hospitalized more than 7 times in just 5 months. It was so hard watching her quickly fade away. I don't know if the disease itself killed her, or the medicines she was taking for it made her immune system too weak to fight infections that killed her.
Very sorry for your valuable loss of your love one.
@@jorgefierro3096 thank you! This brings back very sad memories. I was consumed with reading and watching about my mom's diagnosis. I'm past that, but my sadness about her passing is only growing.
@@zainabalghamdi2403 my wife is going through this same deseas and it painfull to watch her slowly deteriorate.
@@jorgefierro3096 it's great that you are trying to understand her disease. I'm sure she will appreciate that!
@jorgefierro3096 hows your wife?also..what type of pain is she experiencing?if u don't mind me asking
I found out yesterday I have this iv been sick and tired in pain body is swollen I’m grateful there is so much information on RUclips 🙏🏼
Amen! May our Lord bless you!😇
What a good video but trashed by the ridiculously loud music
Music is so loud and busy I can hardly hear them
Excellent video, especially the gal who shared about the isolation and with gal who shared about the feeling of vulnerability! I would turn down background music.....it does overpower!
Thanks to all for sharing in this video! I have gpa/wegeners . this video is so helpful. just knowing others are feeling & dealing with same issue's with this difficult disease helps me not feel so alone in this fight. Ty
2:50 OHBOY! U nailed this one!
Thank you ❤️
I’m nearly diagnosed and finding this video has been very helpful. Thank you so much.
We are so glad you found this helpful. If you have not already spent some time on our website, you will find that it contains lots of helpful resources for people who are newly diagnosed. www.vasculitisfoundation.org/newly-diagnosed/
Thank you for this post. I too have vasculitis like everyone with it my journey has been difficult. I have ANCA vasculitis with marked difficulty ambulating. I agree that reduce is the key. The emotional side of this diagnosis has been difficult because some family members think I don’t do enoug. Your post shows me I’m not alone with this diagnosis
You are definitely not alone! Dealing with the emotional side of vasculitis and being misunderstood by others can be difficult. I wanted to share some resources that may be helpful.
1. Vasculitis Foundation support groups: We offer weekly and monthly virtual support groups where you can connect with others who are living with vasculitis www.vasculitisfoundation.org/living-well/find-support/
2. Find more information on ANCA vasculitis on our website: www.vasculitisfoundation.org/education/vasculitis-types/
3. This webinar on the grief associated with a vasculitis diagnosis is excellent ruclips.net/video/1l6FsokdlXQ/видео.html
4. Our Navigating Your Vasculitis Journey guidebook can be very helpful in dealing with the emotional side of the diagnosis. You can find that guidebook and other mental health resources here www.vasculitisfoundation.org/living-well/mental-wellness/
The background music is so loud it is hard to hear what people are saying
Turn down the music.
This music is ghastly.
Can hardly hear the patients talking, music is too loud.
I'm 20 yes old I've suffered from vasculitis since I was 13
I've had it from 4th grade
@@LesegoSofficial how are you managing it.plz help my husband has it
How u now?? R u okay??
The music is downright nonchalant and frivolous. The topic is serious, folks. Who in the WORLD foolishly chose this music?
Obviously, it's someone who doesn't believe scientific communication is effective, someone who would tell someone not to scrub his hands for 20 seconds but to do so while singing "Happy Birthday" twice.
What inappropriate, irritating and unnecessary MUSAK!!!! Made the information so difficult to focus on. GRRRRR!
January 23. My ammun system reversed and I have vascularitis. It attached my lungs. I can't breath and walk at the same time. 😢
That is a lot to be dealing with. The Vasculitis Foundation has many helpful resources. You can reach out to our patient support coordinator using this form www.vasculitisfoundation.org/about/contact-2/ or join one of our virtual support groups www.vasculitisfoundation.org/virtual-support-meetings/
Music Loud!
Sorry ,but I had to abandone this video. These lovely people had important things to say about their condition , but were drowned out by the totally inappropriate music for such a serious subject !!! It diminishes the message
I liked the video but the music made it pretty hard to follow along
Please change the music.
TURN OFF THAT NOISE!!!
The music is irritating, please remove it. Had to leave video half way through
This makes me feel so must better about having this. I was diagnosed with Leukocytoclastic vasculitis at age 13 and bechets disease at 18. I’m 24 now and a mother and a wife.it sucks but the lord heals my body of a lot !
Living with vasculitis, especially Behcet's disease, can definitely be challenging. We are so glad this video brightened your day. We have a ton of resources, including information about virtual support groups, research opportunities (including a pregnancy registry that helps us gather information that will help other women with vasculitis who want to have families) and more on our website www.vasculitisfoundation.org
my sis was diagnosed with hypersensitivity vasculitis in 2007 and had to retire from work early. she takes prescribed anti-inflammatory and steroid pills regularly. her feet still feel numb with joint pains up to now although the flares stopped when she left work.
I was told four months ago I have vasculitis and my doctor didn't know how to treat it and instead refused to write a referral for another doctor to help me
I can't even walk anymore.i been posting my videos hoping for help. Please if anyone knows how I can get help reply or message me I beg you
Stupid doctor. He should have referred you to a rheumatologist. There is also The Vasculitis foundation. Try to Google Vasculitis Foundation.
Is having blood dots on legs a sign of vasculitis
Some types of vasculitis have blood clots and rashes as one of the symptoms. There are also other diseases that have these symptoms. We'd recommend you see a rheumatologist if you suspect vasculitis. You can find out more about vasculitis on our website www.vasculitisfoundation.org
Wtf is wrong with the music
By the way there is 20 different forms of vasculitis that effects different parts of the body MY CNS Vasculitis is one of the rarest forms effects my brain and spinal column.
Thanks for educating people about one of the rarer forms of an already rare disease. If you are not already familiar with the vasculitis foundation you may find additional helpful resources on our website www.vasculitisfoundation.org
How are you . Now your medicans are of
How does one get diagnosed ?! It’s so frustrating when Kaiser , yup I said it , does not know what to look for and all signs are pointing to vascultis, and even with a team of docs , they play a waiting game..pls share with me who to go to for the next step and accuracy in diagnosing ?!
This music ! Omg take it off pls ! This is a serious video!
You should be seeing a rheumatologist if you are not already.
It can be very frustrating. There are other diseases that have many of the same symptoms as vasculitis so often doctors have to do a lot of testing and looking at all of the other possibilities before they can make a diagnosis of vasculitis. Unfortunately, at this time, there is not a test that can definitively diagnosis vasculitis. Instead doctors look at a variety of test results and your signs and symptoms to help them make the diagnosis. Here are some additional resources you may find helpful in ensuring you receive a timely and accurate diagnosis.
Find a Doctor: www.vasculitisfoundation.org/find-a-doctor/
American College of Rheumatology Guidelines for diagnosis and treatment: www.vasculitisfoundation.org/2021-acr-vf-vasculitis-guidelines/
I believe I have vasculitis and cannot get a diagnosis’s and am in serious serious pain
Ditch the music!
Renal failure, lung masses! 🎶dee dee dee doo do doo do🎵 this music is awful. It's for videos of cute puppies instead.
GET RID OF THAT MUSIC !!!!!!!!
music driving me mad, so annoying cant even hear them
I was just diagnosed with leukocytoclastic vasculitis in June,2019. It’s so early in my diagnosis that I don’t have a cause yet. I have had many health problems over the past 12 years, so now I am wondering if a lot of them are symptoms of vasculitis. For the past three months or so, my legs have been covered in sores and I also have them on my arm, face and chest. They are extremely painful! I have been getting these sores now for several years, but have never known what they are until last month when my doctor did a couple biopsies. I have a lot to learn about this disease, but I really do want to know more. Thank you for this video.
I was also recently diagnosed with leuko vas, after experiencing what I thought was heat rash or hives, contained on my lower legs. It would totally disappear after 4-5 days and not show up again for many months, so it wasn't that big a deal until the last outbreak. It started 3 months ago, and instead of going away after several days, it has gotten progressively worse - not one day of respite. It has traveled up my body, torso and arms. The swelling of my feet and ankles, the fire itching, pain in joints... and on, and on...... Aye Carumba!!!! Former military, athletic, healthy eater, etc., Why is this happening? Is there a support group I can join? Thanks! Cheers for 2020!!
@@boracayclaudi same thing happening to be from last year and it has disturbed my whole life.
I have a friend with this, she has had lots of flare ups. Usually on the feet and legs, not able to wear shoes or walk because of the blisters.
She is constantly on steroids and has an infusion of biological medicine at the hospital.
Are there any food related studies that support certain types of which would help my friend?
I was also diagnosed lecocytoclastic vasculitis since 2018 , which flare up by sitting or standing for an hour .I got them on legs ,arms even on ears . Now am not taking any medicine .These purpura rashes come and go away in a week and rashes comes . This cycle goes on .
Thank you🙏❤️✝️❤️
IAM trying to feel this sickness in it's being. My son is presently dealing with this and it is very hurting for me to know that he has to endure this. He is such an outstanding go for it father and living son. 8 pray that there is something to help him and free him from so much pain in everyway possible. I feel so afraid just from actually reading about it today. I had never hear the word And it is a really frightening illness So to my child and everyone dealing with this please know someone cares and with care come prayers. It's so hard and all we can do is try being there for each . I love u my son.
The music needs to stop 🛑 omg this is such a great resource-of information but the music is unnecessary- Tysm !
As may have noticed, you are not the only one who feels that way about the music. We have definitely taken everyone's comments to heart in later video productions. We leave the video up, even with the annoying music (which we cannot remove unfortunately) because, as you said, the information is helpful. : )
Unwatchable due to music!
Diagnosed with Takayasu’s Arteritis 9/2020.
Vascularitis attached my lungs
We are so sorry to hear this. We hope you are getting the treatment you need. You can find more information about vasculitis, including information about our virtual support groups, on our website www.vasculitisfoundation.org
I am from the UK and I have vasculitis disease to
It would be helpful if this started with an explanation of what it is? Is it like fibromyalgia?
It is an auto-immune disease where a person's immune system mistakenly attacks veins and arteries in their body causing inflammation. This inflammation damages the veins and arteries and can impact blood flow to organs causing organ damage. Depending on what veins and arteries are impacted and how quickly someone is diagnosed and treated, vasculitis can be life threatening.
What is causing it I never knew anyone when I was growing up with anything like this disease my sister has. Just been diagnosed with it I do not believe in everything is autoimmune all of a sudden lots of people have it .
As with many diseases that you are suddenly hearing more about, we are not sure if there is an increase in cases-or just an increase in awareness and therefore an increase in diagnoses. With accurate diagnosis, and proper treatment people with vasculitis are living longer (most now have a normal life expectancy) and that could also explain what seems like an "increase" in vasculitis. However, there may also be an increase in the number of cases of vasculitis. In the past, there was not a good way to accurately track these numbers-but that has changed and over the next few years we will be able to get a clearer picture.
I just found out I got vasculitus red patches here and there all over my legs painful swollen legs tingly and numbness muscles hurting to the point I couldn’t move cause I was stiff to get up 😢
We are sorry to hear about the symptoms you are experiencing, but glad you have a diagnosis that will guide your treatment plan. We have many resources on our website such as treatment guidelines, virtual support groups, and educational webinars that you may find helpful. Our website is www.vasculitisfoundation.org. This landing page will guide you to sections that may be especially helpful for someone who is newly diagnosed www.vasculitisfoundation.org/newly-diagnosed/
A year ago today and for about two months I had no memory of anything! My wife was really going into a panic mode called her son in Canton , Ohio and he said take him to OUSH, he drive from Canton to near Zanesville and drove us to OSUH in Columbus I was admitted 16 Jun 2022, found to have swelling if my brain and spinal chord, severe malnutrition, memory loss. They really had no idea as what was wrong with me! MRIs, CAT scans, 4 spinal taps all non conclusive, was there till 3 Jul. 2022. They stabilized me and was discharged. Well about a month latter a few blood clots put me into the local hospital for a overnighter. My Neurologist at ODU said we are going to find out what's going on. A three hour MRI, a Brain angiogram, both were inconclusive so the final test was done the brain biopsy conformed CNS Vasculitis. Oooo, ok no, finally, but then only two in a million get it and there is no cure! Oh man! well was told we can try to treat it not cure it. So CHEMO here we come well surprisingly I didn 't have my dreams come true about tying a puke bucket around my neck! Felt like I got run over, very tired, grouchy, moody but made it through it . During my CHMO I was hit with COVID which is not good with a weakened immune system. Shrugged it off amazing for a 70 year old! So up and about now about a year latter , have occasional headaches make me wonder if a stroke is in progress, memory is not up to par, patience, and mood swings take place. Filed with the VA for AGENT ORANGE induced CNC VASCULITIS and was evaluated by a Nurse Practioner of Veterans Evaluation Services (that only rates a 1 by the BBB of Texas) in the evaluator's credential it says "Medical Experience in Years:0 SAY WHAT I have CNS that most doctors never heard of and evaluated by this? VA denied my Disability did not even consider the opinion of my Physician that they paid for my care! I am a neuroimmunologist physician scientist who specializes in CNS inflammatory disorders. In my review of the literature there are several publications that indicate that herbicide exposure can contribute to vasculitic inflammation and activate lymphocytes. The VA takes the word of a PN with no YEARS of Medical Experience over .
Assistant Professor of Neurology
Department of Neurology
The Ohio State University
The VA WAY DENEY UNTILL THE VET DIES!
How frustrating.
I have anca vasculitis. i'm not a god damn fighter, i'm a punching bag. i'm only here because i didn't die yet lmao. yeah juggling life with vascilitis is hard as hell and down right impossible at times. that doesn't make me pushing through it STRONG it makes me exhausted and tired of living. the music on this is shit.
I have anca vasculitis too
@@archi9645 I am genuinely very sorry to hear that. I hope if you're being treated for it that it's actually helping. My treatments aren't.
@@justmonika1949 i will pray for your fast recovery.... Have faith in god everything will be fine soon
@@justmonika1949 we are fighters we can't giveup we have to fight and we will win
@@justmonika1949 i am too tired of living but we have to comeover this
Lose the obnoxious music noise!!! Bye!
We appreciate your feedback and we've heard you, and others who have made similar comments, loud and clear. Unfortunately, with the way this video was produced we can't edit out the music, but we will be sharing a new "One thing I wish people knew about vasculitis" video soon and have made sure the music is not intrusive.
Shut the music
Does vasculitis feel and look like a raised vein that feels like a Charlie horse.. I was just diagnosed with Rhymatoid arthritis?
I want people to wear their masks so I don’t get even more sick!!!
🥸
It's too bad that I can't get medical treatment
everybody blames smoking and vasculitis i think it is bull crap i cigar a day doesnt matter
I never smocked !
I got it after quitting smoking for a year. It was one of the things I suspected. I noticed improvement after starting back smoking. It definitely didn't effect it
i dont like my diases im 12
why this stupid music
annoiyng music
I lost my kidneys from a flare up of Microscopic polyangiitis :( that's not fun.......
My sister just got diagnosed in aug. she is doing dialysis
Did you go thru dialysis or get a transplant ?
J
ABSOLUTELY DISGUSTING CHOICE OF MUSIC.
I laughed at first at how ridiculous the choice was, but then when I read the comments and about the death of loved ones, and heard the fear in the people's words in the video I came to the conclusion you are being offensive.
I came here for comfort and you insulted all of us.
Music is terrible, annoying, obtrusive. It’s for people making a cucumber salad on instagram.
I have LCV and I wish more medical care facilities understood this disease. I was diagnosed in 2007 and have chronic breakouts. I’ve not had medication since 2009. Take only Aleve and now I’m nursing a 9 month old leg wound from an initial breakout that was scratched while I slept. I’m so tired all the time. Thank you for showing these others who totally get the same things I feel.
Hope things are improving for you. My friend gets pupera on her feet and legs. These as you know are so painful and can get infected.
This last year has been very difficult with continuous flare ups. She can walk most of the time as she csnt wear shoes.
My friend has Lucoskylastic vasculitis.
Dears please tell me which we need to take for lcv
@@insafyousaf Steroids are the first meds that are given. I think initally they help but the longer the desease progresses it can be hard to treat.
Currently my friend is being given a chemotherapy drug.
Ive been in remission andcmy bloodwork is normal. I have wegners. But im soooooo tired still. Dr's dont seem to understand