Hi Ken, my name is Janet. I live in North Texas. A few weeks ago my Rheumetologst told me I have Scleroderma, limited. It don't feel limited. I'm so tired all the time, my hands, legs and feet hurt. I have been thrown pills for this and that. My BP is out of control and I take pills for that plus nurileptics. One thing after another. I don't feel like I'm going to die but, my life has changed so much and everything is so hard to do. I'm praying anyone who has this maybe they will find a cure. My doc said there is no cure. But, I have faith .
Ken I understand a lot of what you are going thru and the courage you show is amazing. I am 80 and a woman who was exceedingly active as an equestrian. 30 years ago I began to get so fatigued I could no longer saddle or ride my horses. I was diagnosed with sjogrens syndrome and dealt with that for a number of years no longer riding or very active then a few years ago diagnosed with lupus which pretty much put the skids on me. Moving to another State and going to a new rheumatologist for lupus he ran a lot of tests and said he could treat the sjogrens and lupus but I had major "soft tissue" issues he didn't treat and said I would need another doctor. Not knowing what he meant I ignored that until my BP spiked exceedingly high...had more testing and a dexa scan. The endocrinologist that read the scan diagnosed scleroderma advanced and now I am waiting for another specialist. This diagnosis answers a lot of questions that other doctors ignored as I am so exhausted and reached the point of great difficulty walking and terrible heartburn I had never experienced before nor such high BP. I am finding doctors or nurses know little about this disease and most people refer to it as a "skin disorder" which is frustrating. I have lived wit more joy than most 10 people have experienced in their lifetime and I'm not ready to give it up yet but there are days I consider the Rainbow Bridge with my 16 year old Service Dog ( I also have epilepsy from head injuries)....he is a seizure alert dog and my best friend besides Jesus. God bless you. Thank you for your testimony and encouragement.
I can't imagine everything you're going through Ken, but I'm so glad to hear you're continuing the fight and doing all that you can to push through. You're incredibly inspirational and I will help spread as much information as I can to further the cause.
Hey Ken, so happy with the progress you've made, every chance I get I pass along information regarding Scleroderma - getting the information out one person at a time, we can all fight it!
So good to hear you are doing well ! I was diagnosed with Scleroderma in 2010! I am having lots of issues with my hands and feet at the moment, seems like it's always something! I am really glad you found the foundation, I think you will get lots of benefits from it! I want to wish you the best and I will pray for you!👍🙏
Is there an update for this video? I mean, this is heart wrenching. I'd never heard of this disease, until now. I just today asked my wife, who's an R.N.
Hang in there, positivity can make a difference. It’s a horrible disease and I will never let it beat me! I also have had so many lung collapses and surgery that I thought for a short time I’d die too. I don’t think like that ever anymore. My goal is to be a beacon of positivity to others. Thank you for your raw honesty, the more positivity we can get out there the better. Never stop educating and encouraging others. It enriches my life and in a ripple effect others as well. 🙏❤️
Hi Ken, I hope you are well. My brother was diagnosed with scleroderma (systemic sclerosis) when he was about 14 years old. He suffered a cardiac arrest when he was 12 and after multiple attempts to understand what had led to this, he was diagnosed with this disease. He loved playing football but he had to give up all physical activities. Over the past few years he was undergoing therapy to manage the condition since there isn’t a cure and he was generally feeling and managing well. He caught covid in December last year and spent about 4 months in hospital with constantly high fever and breathing difficulties. He spent many weeks in the ICU, including time on a ventilator. At the end of April this year he came home. We all thought this nightmare was over, but he soon started to feel tired, fatigued and generally unwell. The disease was progressing rapidly and his heart had been put under an enormous amount of stress. He suffered a second cardiac arrest and passed away a week later at the end of May, at the age of 22. He was a strong person, determined to fight off any new obstacles that were thrown at him. He knew exactly what was coming and how difficult it would have been, but despite that he never gave up life and refused to be defeated. In all these years, he never complained about anything and was always ready to make a joke and smile, despite the pain he must’ve been experiencing. Over the past few days, I have been wondering about what he might have been really thinking all along, about all the fears he tried to hide and how distressing the last few months must have been for him. He always tried to put on a brave face and I know he didn’t want to give up. His life was literally taken from him and his future too. We had so many ideas and plans in mind. Now it's all gone and I can't come to terms with that. Thanks for sharing your story here, don't give up and enjoy life, like my brother did.
Dear Ken, Please don’t keep all this pain inside.People who love you want to help you, talk about how you feel to them, never try to fight this alone.Stress makes it all worse.I want to give you a huge hug. I totally understand how you feel.All you can do is listen to your body and embrace the new you.All we suffers can do is take life a day at a time accepting that we can’t make to many plans or take anything for granted.This disease calls the shots.You are an amazing man thank you for your honesty. I know how hard times can be with this painful disease.Being positive certainly helps. I pray that one day soon they will find a cure for us.If not there is still hope a promise from God Revelations 21 verse 4 And he will wipe out every tear from their eyes,and death will be no more ,neither will mourning nor outcry nor pain be anymore. Isaiah 33 v 24 And no resident will say “I am sick.” The bible promises that the earth and the residents upon it will one day live on a paradise earth where there will be no sickness or death.We have been given a hope beyond the suffering we are enduring now. Talk with one of Jehovah’s witnesses they will show you a hope for the future, that can’t be found anywhere else. I wish you all the best Ken now and in the future.
Human form of life isn't actually designed to compete with other species in physical feats or skills. What is the unique privilege of human form than? A real human means to find out what is life itself for understanding that we have all problems gone. Then? What's life? Life isn't the ever changing body itself but the person "I" who falsely identifies with the exterior of this temporary field of activities. This is the beginning. I am not the ever changing gross mater nor the subtle material ever busy mind, I am the observer inside who has to learn how not to be drawn into the misleading chain of impressions imposing false narratives of "me" and "my"
Hi Ken, my name is Janet. I live in North Texas. A few weeks ago my Rheumetologst told me I have Scleroderma, limited. It don't feel limited. I'm so tired all the time, my hands, legs and feet hurt. I have been thrown pills for this and that. My BP is out of control and I take pills for that plus nurileptics. One thing after another. I don't feel like I'm going to die but, my life has changed so much and everything is so hard to do.
I'm praying anyone who has this maybe they will find a cure. My doc said there is no cure.
But, I have faith .
Ken I understand a lot of what you are going thru and the courage you show is amazing. I am 80 and a woman who was exceedingly active as an equestrian. 30 years ago I began to get so fatigued I could no longer saddle or ride my horses. I was diagnosed with sjogrens syndrome and dealt with that for a number of years no longer riding or very active then a few years ago diagnosed with lupus which pretty much put the skids on me. Moving to another State and going to a new rheumatologist for lupus he ran a lot of tests and said he could treat the sjogrens and lupus but I had major "soft tissue" issues he didn't treat and said I would need another doctor. Not knowing what he meant I ignored that until my BP spiked exceedingly high...had more testing and a dexa scan. The endocrinologist that read the scan diagnosed scleroderma advanced and now I am waiting for another specialist. This diagnosis answers a lot of questions that other doctors ignored as I am so exhausted and reached the point of great difficulty walking and terrible heartburn I had never experienced before nor such high BP. I am finding doctors or nurses know little about this disease and most people refer to it as a "skin disorder" which is frustrating. I have lived wit more joy than most 10 people have experienced in their lifetime and I'm not ready to give it up yet but there are days I consider the Rainbow Bridge with my 16 year old Service Dog ( I also have epilepsy from head injuries)....he is a seizure alert dog and my best friend besides Jesus. God bless you. Thank you for your testimony and encouragement.
I can't imagine everything you're going through Ken, but I'm so glad to hear you're continuing the fight and doing all that you can to push through. You're incredibly inspirational and I will help spread as much information as I can to further the cause.
God bless you and continue to be optimistic. My brother has it and is painful for us to see him struggling on his daily life.
Hey Ken, so happy with the progress you've made, every chance I get I pass along information regarding Scleroderma - getting the information out one person at a time, we can all fight it!
I wonder how's he doing now his heart broking 😢
So good to hear you are doing well ! I was diagnosed with Scleroderma in 2010! I am having lots of issues with my hands and feet at the moment, seems like it's always something! I am really glad you found the foundation, I think you will get lots of benefits from it! I want to wish you the best and I will pray for you!👍🙏
Is there an update for this video? I mean, this is heart wrenching. I'd never heard of this disease, until now. I just today asked my wife, who's an R.N.
Hang in there, positivity can make a difference. It’s a horrible disease and I will never let it beat me! I also have had so many lung collapses and surgery that I thought for a short time I’d die too. I don’t think like that ever anymore. My goal is to be a beacon of positivity to others. Thank you for your raw honesty, the more positivity we can get out there the better. Never stop educating and encouraging others. It enriches my life and in a ripple effect others as well. 🙏❤️
Ohh good to hear that how are you doing now
Hi Ken, I hope you are well. My brother was diagnosed with scleroderma (systemic sclerosis) when he was about 14 years old. He suffered a cardiac arrest when he was 12 and after multiple attempts to understand what had led to this, he was diagnosed with this disease. He loved playing football but he had to give up all physical activities. Over the past few years he was undergoing therapy to manage the condition since there isn’t a cure and he was generally feeling and managing well.
He caught covid in December last year and spent about 4 months in hospital with constantly high fever and breathing difficulties. He spent many weeks in the ICU, including time on a ventilator. At the end of April this year he came home. We all thought this nightmare was over, but he soon started to feel tired, fatigued and generally unwell. The disease was progressing rapidly and his heart had been put under an enormous amount of stress. He suffered a second cardiac arrest and passed away a week later at the end of May, at the age of 22.
He was a strong person, determined to fight off any new obstacles that were thrown at him. He knew exactly what was coming and how difficult it would have been, but despite that he never gave up life and refused to be defeated. In all these years, he never complained about anything and was always ready to make a joke and smile, despite the pain he must’ve been experiencing.
Over the past few days, I have been wondering about what he might have been really thinking all along, about all the fears he tried to hide and how distressing the last few months must have been for him. He always tried to put on a brave face and I know he didn’t want to give up. His life was literally taken from him and his future too. We had so many ideas and plans in mind. Now it's all gone and I can't come to terms with that.
Thanks for sharing your story here, don't give up and enjoy life, like my brother did.
All my condolences. Your brother is resting peacefully, suffering is over. God bless you.
sorry for your lovely brother😔🙏
Sorry for your lost🙏😥🙏
Soo good to see this...
It's very sad that's there's nothing yet to heal this disease. I hope someday soon a cure, or better treatments can be found.
Blessings
Going through D same feeling.. Doing d same thing... 😥😥😥😥😥😥
Dear Ken, Please don’t keep all this pain inside.People who love you want to help you, talk about how you feel to them, never try to fight this alone.Stress makes it all worse.I want to give you a huge hug. I totally understand how you feel.All you can do is listen to your body and embrace the new you.All we suffers can do is take life a day at a time accepting that we can’t make to many plans or take anything for granted.This disease calls the shots.You are an amazing man thank you for your honesty. I know how hard times can be with this painful disease.Being positive certainly helps. I pray that one day soon they will find a cure for us.If not there is still hope a promise from God Revelations 21 verse 4 And he will wipe out every tear from their eyes,and death will be no more ,neither will mourning nor outcry nor pain be anymore. Isaiah 33 v 24 And no resident will say “I am sick.” The bible promises that the earth and the residents upon it will one day live on a paradise earth where there will be no sickness or death.We have been given a hope beyond the suffering we are enduring now. Talk with one of Jehovah’s witnesses they will show you a hope for the future, that can’t be found anywhere else. I wish you all the best Ken now and in the future.
i have this as well i know how you feel i am the same be well
You look just like my brother hope u are ok
❤️❤️❤️
Human form of life isn't actually designed to compete with other species in physical feats or skills. What is the unique privilege of human form than? A real human means to find out what is life itself for understanding that we have all problems gone. Then? What's life? Life isn't the ever changing body itself but the person "I" who falsely identifies with the exterior of this temporary field of activities. This is the beginning. I am not the ever changing gross mater nor the subtle material ever busy mind, I am the observer inside who has to learn how not to be drawn into the misleading chain of impressions imposing false narratives of "me" and "my"
But this world is so cruel its better to die then to live like this.