I am so sorry for ur loss. I know ur pain, my 21 uear old son os terminally ill with Wegeners and is in End Syage Renial Failure and to sustain life has to do hemodialysis 3 times a week..
You slowly watch this disease suck the life out of our lived ones... The pain is sooi deep watching them suffer and slowly die. My heart goes out the patients as well as their familys
I am so sorry for our loss! This really touched me as I am a survivor of Vasculitis myself.I was lucky to have a doctor that saw it immidiately.Then started years with tuff treatmet,bloodtestesand urinetestes every second day for about 2 years together with othwer check ups.But in the end in did pay off.This is now nearly 7 years ago,and I am still here.I am not saying thistoo hurt you as your son died from this horrible desease.I just want too give hop to people with Vasculitiis.
In 02 I was diagnosed with WG. I had the symptoms; trouble urinating-nose bleeds-couching up blood. Had lung biopsy and treated with Cyclophosomade (Cytoxin) and high does of steroids. I was then switched from Cytoxin to Methotrexate. I'm off steroids now, but have inflamatory arthritius, and am getting some hearing problems now. If you or a loved one have WG there's many web sites that give links to support groups...GL
Thank you so much Mr. Lesko.. My husband has had WG for 14 yrs now.. He almost died from not being diagnosed.. They tried to send him to a phyciatrist.. thank GOD we looked further in medical doctors.. It is a horrible disease.. My prayers are with you and your family.. To those who are caregivers also deserve koodo's.. It is very hard on them also. Anyone who is a caregiver can reach me at my email.. I can surely use some help on this one... It is so difficult to care for someone chronicly il
I was 31 when they diagnose this disease, I’m 35 now, I was so week that the only thing I can do was breathed and barely. It attack my lungs, kidneys and lairing. I was a living hell. I really don’t want to remember. The problem right now is that I just can’t keep up with the medicine. Were can I get help with the medication?
I was 31 when they diagnose this disease, I’m 35 now, I was so week that the only thing I can do was breathed and barely. It attack my lungs, kidneys and lairing. I was a living hell. I really don’t want to remember. The problem right now is that I just can’t keep up with the medicine. Were can I get help with the medication? Take care all
Anyway was Treated with Chemo and Steroids and other Immune supressents. But the Medicine left its mark......I now have bone disease which was caused by the Chemo and Steroids. It changed my life dramatically. now having a low Immune system i get anything and Everything. Was on Dialysis for a few years untill i had a Transplant. but even now I have Relapses. Docs said it would of Never got so bad if the GP done a simple Blood Test or sent me to the Hospital. I was Totally Dismissed........
I Have this was Diagnosed In 2006......My kidneys was mainly effected, Lungs a little, eyesight and joints...I totally Agree with you its a silent killer i went to my doctors several times before they actually took a blood test which showed my Kidneys was Failing. Was rushed to an Amazing Kidney unit who does deal with Kidney disease's and lucky for me this is one of them. Had a Biopsy and Its showed wegeners.........
Wegener's has changed my life completly... I was diagnosed early yet lost a lot... I will go on as my daughter depends on me (6yo) and life isn't over. For all Wegeners patients... live life to the fullest and stick to the program... you will feel better.
Let people know about the disease you have so treatment for others is early so the disease can be handled.
My husband has lung nodules that no one can determine....He was really sick in Oct./Nov.....so watching this makes me happy I asked today to test his ANCA's. He's going in today to do so.....Any other tests that may show something if this comes in Neg.
@MrBrettjohnson ...... I got sick when i was 12...im 19 now. In some ways it messed my life up, i missed out on going to school with my friends, Im stunted in growth and i didnt go through puberty. Im taking growth hormones now.
But it also showed me how important life is and to not take it for granted! I met so many people, it showed me who my true friends were and now Im good! I had a kidney transplant when i was 15.
I'm waiting anxiously but still patiently for my ANCA tests to come back. There were suspicions that I have either Wegener's or Sarcoid from my DCR eye surgery back in April of this year. It's true, don't ignore anything. You can wipe out your computer and start over from scratch like new birth but you can't do that with your own body so it's imperative you hear a yes or no. Good luck to all those out there with any type of vasculitis, because I know it's hard.
Greg was one of my dearest friends at Loyola University New Orleans. Though many miles and moments have passed since those days Greg, I want you and Lynn to know that Mark will ever be in our prayers. And if we can do anything down here to increase the awareness of this ravaging killer, we stand ready to help. God Bless You both, and may he bring healing and peace to your sadness.
hi i want to said thanks to themarks father and all hes familly for make this video and really sory about mark . i have wegener's i just get my dignosis in 2008 i almost die nobody no what i have i start with my eyes and my lungs and another organs now i just fight for my life and for my family thank you for make this video
I have wegeners and this is very moving. I didn't realise until half way through the video that Mark died. I'm so sorry for the family. I was extremely lucky as I almost died but then Kingston Hospital in London made the diagnosis and I recovered. Medical care remains amazing but very few people know about this or related illnesses. People think its a virus which is what my doctor thought it was originally.
A second source of information and support on Wegener's granulomatosis is the Vasculitis Foundation, and American group started by a nurse who came down with the disease. I emphasize that this is a perfect video to get across to people with the symptoms that getting to a doctor before the kidneys, lungs, heart are involved. It's a perfect video for family members to watch when a family member is diagnosed with WG: you have new normals, but never are cured. Again, I am a WG patiuent in remission.
There are other sources of info. for WG patients (I am one- in remission) . Wegener's Granulomatosis Disease Support Forum- started by an Australian with WG- is one. (I'm over the letter limit, so will finish in a second note.) I posted this video on it, and it was uniformly applauded as a valuable contribution to the fight to in form people about this potentially fatal disease: 8% of people with it die within 2 years!
My mom has had Wegeners for about 18 years now so I can relate to everything that this guy went through with his son...When I saw this video and read in the discription that it was on your local news I said "FINALLY!!!" Because up until now I have seen nothing about Wegeners besides what's on the internet shown to mass audiences...
Thank you for this video. Very sorry about your son. I also have WG but am currently in remission and am one of the lucky ones who was diagnosed in time.
this is bryan, marks, brother. My hat is off to you for this high class production. Thank you, from the bottom of my heart, and I'm sure Mark's as well for you attention and dedication to this. A great journalistic career is ahead of you, keep up the fantastic work my friend.
This the best single piece I've seen on WG! Good job. I am a Weggie (someone with WG). I've poisted the link to the video on the Weggie support website I visit each day. I'm in remission, so I advise oother Weggies newer to thje disease than I. Your video, however, makes every single important point that needs to be made. Again, GOOD JOB!
When my WG was discovered I was told that I would have lived for about another month without detection. It wonderful to hear awareness being raised on this little known of disease.
This is actually not me who is affected personally by this disease... Greg (the father) in the video.. it's his son who passed away from this. Greg is someone i have gotten to know because we both work at the news station together. I was honored that he would talk to me on camera about it.
Relish the day... It could be the last
sherryv1 2 months ago
I am so sorry for ur loss. I know ur pain, my 21 uear old son os terminally ill with Wegeners and is in End Syage Renial Failure and to sustain life has to do hemodialysis 3 times a week..
You slowly watch this disease suck the life out of our lived ones... The pain is sooi deep watching them suffer and slowly die. My heart goes out the patients as well as their familys
sherryv1 2 months ago
im sorry. Wegener's Granulomatosis is a serious diease.. i know.. my dad recently got it. I am really hoping for the best.
jesshaasxo 8 months ago
I am so sorry for our loss! This really touched me as I am a survivor of Vasculitis myself.I was lucky to have a doctor that saw it immidiately.Then started years with tuff treatmet,bloodtestesand urinetestes every second day for about 2 years together with othwer check ups.But in the end in did pay off.This is now nearly 7 years ago,and I am still here.I am not saying thistoo hurt you as your son died from this horrible desease.I just want too give hop to people with Vasculitiis.
Hans021220 8 months ago
thats sad sorry for your loss my old friend has it they gave him 4 years maybe
sexything72 1 year ago
In 02 I was diagnosed with WG. I had the symptoms; trouble urinating-nose bleeds-couching up blood. Had lung biopsy and treated with Cyclophosomade (Cytoxin) and high does of steroids. I was then switched from Cytoxin to Methotrexate. I'm off steroids now, but have inflamatory arthritius, and am getting some hearing problems now. If you or a loved one have WG there's many web sites that give links to support groups...GL
itsallgood20002 1 year ago
Im 16 and i got collitus ulsarosa and wegener disease. i survied it and came true in 12 weeks hospital, 3 months revalidation. alot of scars :(
bloodzwaard 1 year ago
Thank you so much Mr. Lesko.. My husband has had WG for 14 yrs now.. He almost died from not being diagnosed.. They tried to send him to a phyciatrist.. thank GOD we looked further in medical doctors.. It is a horrible disease.. My prayers are with you and your family.. To those who are caregivers also deserve koodo's.. It is very hard on them also. Anyone who is a caregiver can reach me at my email.. I can surely use some help on this one... It is so difficult to care for someone chronicly il
crazycoco1028 1 year ago
I was 31 when they diagnose this disease, I’m 35 now, I was so week that the only thing I can do was breathed and barely. It attack my lungs, kidneys and lairing. I was a living hell. I really don’t want to remember. The problem right now is that I just can’t keep up with the medicine. Were can I get help with the medication?
2DAREPUBLICAMEXICANA 1 year ago
I was 31 when they diagnose this disease, I’m 35 now, I was so week that the only thing I can do was breathed and barely. It attack my lungs, kidneys and lairing. I was a living hell. I really don’t want to remember. The problem right now is that I just can’t keep up with the medicine. Were can I get help with the medication? Take care all
2DAREPUBLICAMEXICANA 1 year ago
My mom was just diagnosed with this. I don't know what to do. I haven't even heard of this disease.
latequilera22 1 year ago
Anyway was Treated with Chemo and Steroids and other Immune supressents. But the Medicine left its mark......I now have bone disease which was caused by the Chemo and Steroids. It changed my life dramatically. now having a low Immune system i get anything and Everything. Was on Dialysis for a few years untill i had a Transplant. but even now I have Relapses. Docs said it would of Never got so bad if the GP done a simple Blood Test or sent me to the Hospital. I was Totally Dismissed........
Emma20055 1 year ago
I Have this was Diagnosed In 2006......My kidneys was mainly effected, Lungs a little, eyesight and joints...I totally Agree with you its a silent killer i went to my doctors several times before they actually took a blood test which showed my Kidneys was Failing. Was rushed to an Amazing Kidney unit who does deal with Kidney disease's and lucky for me this is one of them. Had a Biopsy and Its showed wegeners.........
Emma20055 1 year ago
Wegener's has changed my life completly... I was diagnosed early yet lost a lot... I will go on as my daughter depends on me (6yo) and life isn't over. For all Wegeners patients... live life to the fullest and stick to the program... you will feel better.
Let people know about the disease you have so treatment for others is early so the disease can be handled.
C.M.
El Paso, TX
wizard0562 1 year ago
My husband has lung nodules that no one can determine....He was really sick in Oct./Nov.....so watching this makes me happy I asked today to test his ANCA's. He's going in today to do so.....Any other tests that may show something if this comes in Neg.
surfbetty69 1 year ago
it sucks i have wegeners disease and im 14 it ruined my life i was in the hospital for 2 months and am getting a kidney transplant soon
MrBrettjohnson 2 years ago
@MrBrettjohnson ...... I got sick when i was 12...im 19 now. In some ways it messed my life up, i missed out on going to school with my friends, Im stunted in growth and i didnt go through puberty. Im taking growth hormones now.
But it also showed me how important life is and to not take it for granted! I met so many people, it showed me who my true friends were and now Im good! I had a kidney transplant when i was 15.
devereuxback 1 year ago
soooo.... how did he got this disease???
aguirreruru 2 years ago
@aguirreruru They don't know what causes it. The Vasculitis Foundation funds research, etc. Thank you. Mark's dad.
satguy2 2 years ago
I'm waiting anxiously but still patiently for my ANCA tests to come back. There were suspicions that I have either Wegener's or Sarcoid from my DCR eye surgery back in April of this year. It's true, don't ignore anything. You can wipe out your computer and start over from scratch like new birth but you can't do that with your own body so it's imperative you hear a yes or no. Good luck to all those out there with any type of vasculitis, because I know it's hard.
Cheesewyck 2 years ago
Greg was one of my dearest friends at Loyola University New Orleans. Though many miles and moments have passed since those days Greg, I want you and Lynn to know that Mark will ever be in our prayers. And if we can do anything down here to increase the awareness of this ravaging killer, we stand ready to help. God Bless You both, and may he bring healing and peace to your sadness.
lroques 2 years ago
hi i want to said thanks to themarks father and all hes familly for make this video and really sory about mark . i have wegener's i just get my dignosis in 2008 i almost die nobody no what i have i start with my eyes and my lungs and another organs now i just fight for my life and for my family thank you for make this video
klv92311 2 years ago
I have wegeners and this is very moving. I didn't realise until half way through the video that Mark died. I'm so sorry for the family. I was extremely lucky as I almost died but then Kingston Hospital in London made the diagnosis and I recovered. Medical care remains amazing but very few people know about this or related illnesses. People think its a virus which is what my doctor thought it was originally.
Brian
brianwillman 2 years ago
A second source of information and support on Wegener's granulomatosis is the Vasculitis Foundation, and American group started by a nurse who came down with the disease. I emphasize that this is a perfect video to get across to people with the symptoms that getting to a doctor before the kidneys, lungs, heart are involved. It's a perfect video for family members to watch when a family member is diagnosed with WG: you have new normals, but never are cured. Again, I am a WG patiuent in remission.
phainopepla95 2 years ago
There are other sources of info. for WG patients (I am one- in remission) . Wegener's Granulomatosis Disease Support Forum- started by an Australian with WG- is one. (I'm over the letter limit, so will finish in a second note.) I posted this video on it, and it was uniformly applauded as a valuable contribution to the fight to in form people about this potentially fatal disease: 8% of people with it die within 2 years!
phainopepla95 2 years ago
My mom has had Wegeners for about 18 years now so I can relate to everything that this guy went through with his son...When I saw this video and read in the discription that it was on your local news I said "FINALLY!!!" Because up until now I have seen nothing about Wegeners besides what's on the internet shown to mass audiences...
baystategirl 2 years ago
Thank you for this video. Very sorry about your son. I also have WG but am currently in remission and am one of the lucky ones who was diagnosed in time.
retired1211 2 years ago
I'm sure Greg appreciates words of courage. Thank you!
btw25 2 years ago
this is bryan, marks, brother. My hat is off to you for this high class production. Thank you, from the bottom of my heart, and I'm sure Mark's as well for you attention and dedication to this. A great journalistic career is ahead of you, keep up the fantastic work my friend.
bryanlesko 2 years ago
This the best single piece I've seen on WG! Good job. I am a Weggie (someone with WG). I've poisted the link to the video on the Weggie support website I visit each day. I'm in remission, so I advise oother Weggies newer to thje disease than I. Your video, however, makes every single important point that needs to be made. Again, GOOD JOB!
phainopepla95 2 years ago
When my WG was discovered I was told that I would have lived for about another month without detection. It wonderful to hear awareness being raised on this little known of disease.
Thank you for doing this.
heatkinson 2 years ago
Thank you so much for sharing your story. I have WG and am so thankful that people are trying to help raise awareness.
kleejackson 2 years ago
This is actually not me who is affected personally by this disease... Greg (the father) in the video.. it's his son who passed away from this. Greg is someone i have gotten to know because we both work at the news station together. I was honored that he would talk to me on camera about it.
btw25 2 years ago
same thing that happened to me almost exactly!!!!!!! Thanks ever so much for doing it.
Mark
actormark 2 years ago
tyvm.
courtneycooter 2 years ago
this is almost the exact same story that happened to my 9 yr old son:(
courtneycooter 2 years ago
I'm very sorry for your loss, it's a terrible disease... we are trying to spread the word and create awareness.
btw25 2 years ago