I know scleroderma can seem frightening at first but it is just an often misused and misunderstood title for this disease as there are SO MANY variations of it. It seems that so far you’re fortunate to not have the worst type. Many people hear the term ‘scleroderma’ and mistakenly believe it is only a skin disease! Very frustrating when people have this attitude as victims of diffuse scleroderma, which is known also as progressive systemic sclerosis, is the more appropriate term used by specialist doctors. There is nothing more frustrating when someone asks what have and when the term scleroderma is used, they think and often say, “oh, that just a skin condition”. What the public as well as some GPS fail to understand is that this awful disease can cause organ damage as well as deformities in the body’s joints and skin. This disease should not be plated down. Yes the severest form of it is rare, making it a lonely ☹️ disease to suffer. I should know because I have it. The good news is though that there is more research being done now and although there is no cure, there are many drugs that help with the disease progression as well as symptom relief. Also I believe that a positive attitude and faith in God dramatically help. So far, I have survived with the worst form of the disease for 14 years! Yay 😁
@@claudiacastroyaya9504 You are welcome I am also training my own service dog She assists me with activities of daily living, as well as alerting my family when I am choking. She saved my life once by jumping on my back,which helped to expel the food from my trachea, so I could breathe again! She also helps me with disease related anxiety, plus is now learning public access. She to visit me when I am in hospital. She is just what us scleroderma-fighters need!
Life goes on and the Brits, who coined the term (during what were very dark times) "Keep Calm & Carry On" are pros at this. Well done SRUK, for these uplifting, informative videos that reveal the most important thing of all, that life does go on. My very, very best wishes to Chloe & Danny. I wish good health and happiness to you both and a long life together.
Hi I've just been diagnosed after 8years of having to pester the GPS and even now just cause I've been diagnosed I'm still getting no help with medication or any kind of help I'm so poorly amd stressed and don't know what to do x
Hi You are a lovely person and so lucky to have your family around you. My story is much the same, and just very slowly i have more skin issues but also mainly because I am a redhead and experienced so much sunburn growing up. Mainly over time I have had some lupus crossover issues but being positive about what you do have in your life and do not suffer from today is the best gift any medicine could give you…Food and love is your medicine. I am so happy fo you. Congrats‼️
Chloe, I understand you take care off everyone, without thinking of yourself, and I’ve done so since age 14. I’ve only been in testing for a few months, and my doctor gets upset when I search out information. As you said, there can be a lot of unfounded garbage on the net, so it’s best to be careful. With a sinking feeling that this illness may be scleroderma, I’m keeping a positive attitude, and becoming a hypnotherapist in the hopes of at least curbing whatever ails my body. My prayers are with you as I continue fighting and staying positive. (Hope your marriage stays as gleeful and positive as you.)
Hello yes a lot of garbage on google. Dr told me I have scleroderma ţo. I think the main reason is traumas that we have emotional stress ..i think the cure is in ourselves .and I think body can heal itself
Are you in Cypres Texas. We are just trying to get the Diagnosis part right now. Your video was very helpful to me and my wife. My wife is the one with the condition. We would love to communicate with you more on this subject
hello , I use to go to a support group for Lupus and Collagen Disease s . I am aware of it . 2 women had it . Mine is Dermatomyositis since 1991 . I get IVIG s for it . Have you tried it ?
Have you tried the AP Protocol? Henry Scammel wrote a book on the specifics. The use of Minocycline with RA, Lupus and Scleroderma has proven successful for many. Wishing you the best!
This treatment worked for me. Within 12 months I went from deaths door to normal blood tests. Then using yoga, nutrition and lifestyle changes I maintained normal internal health for the past 25 yrs. I recommend this as a least harsh effects on the internal organs, low dose antibiotics is a cure imo. The source might be like Lyme disease ie a parasite or infection
@@poonamkrishna7057 I tried almost everything including Ayurveda but failed,den one of my friend took me to Chennai Apollo der one dermatologist suggest me s.n.pandit health care Dr.ranjini she changed my life completely
I've been suffering with this for 3 years and can not get a diagnosis. Can anyone reccomend a place where they have a clue? I have systemic version. I am getting diagnosed with one thing at a time. The rheumatologist here in pa don't believe in ana negative autoimmune. I am close to suicidal because I can't get treated. I have shiny skin, liver, kidney involvement. I tested positive for ssa/ssb and can't even get a sjorgens diagnosis due to neg ana. My hands turned red, bottom of feet, it caused high blood pressure and they are blaming that for redness. It's crazy. They treating my like hypochondriac. My face has turned into leather. I could go on for days with what all is involved. You already know if you have systemic. My voice completely changed last month. I have problems with every gland I have. I really need a dr who knows about this.
We've got a number of articles on our website about physio for scleroderma. Here's our most recent one: www.sruk.co.uk/about-us/news/physiotherapy-why-what-how/
@@Murat-eq3crHi! Sorry for the late reply. I have just seen your message. What type of scleroderma do you have? I'm very scared of this disease. 😢 It's difficult. Where are you from?
@@lillyrocks2011 i am from Turkey i have overlap scleroderma mix connective tissue disease rheumatoid arthritis lupus antiphospholipid syndrome and scleroderma
@@Murat-eq3cr wow! I have been diagnosed mids 2022, the last year but I have more symptoms so I suspect I have something else than only scleroderma. And since when and how were you diagnosed? How old are you?
@@lillyrocks2011 since 1.5 years i have symptoms but i do not have skin sclerosis more i have arthritis and skin panniculitis joint pains finger arthritis redness allover body with itching attack i am 30 years old now
Hi Cheryl, I know how you're feeling right now. You will be fine. Just take your doctors advice. I've been diagnosed a couple of months ago although I've been seeking for answers about my disease for about 3 years.
Do you get an infusion in hospital with in example ilomedin? This medicine helps to increase the blood circulation in the vessels - it should help to reduce raynauds attacks.Some patients feel that it helps some not.I do this procedure twice a year and since I have done this at least I am not feeling tired anymore. 👍
I had the infusion where I live in New Zealand. It was awful - 6 hours a day for a week. I suffered a lot during it and it did not help my raynauds. Caryl
I know scleroderma can seem frightening at first but it is just an often misused and misunderstood title for this disease as there are SO MANY variations of it. It seems that so far you’re fortunate to not have the worst type. Many people hear the term ‘scleroderma’ and mistakenly believe it is only a skin disease! Very frustrating when people have this attitude as victims of diffuse scleroderma, which is known also as progressive systemic sclerosis, is the more appropriate term used by specialist doctors. There is nothing more frustrating when someone asks what have and when the term scleroderma is used, they think and often say, “oh, that just a skin condition”. What the public as well as some GPS fail to understand is that this awful disease can cause organ damage as well as deformities in the body’s joints and skin. This disease should not be plated down. Yes the severest form of it is rare, making it a lonely ☹️ disease to suffer. I should know because I have it. The good news is though that there is more research being done now and although there is no cure, there are many drugs that help with the disease progression as well as symptom relief. Also I believe that a positive attitude and faith in God dramatically help. So far, I have survived with the worst form of the disease for 14 years! Yay 😁
I pray that you have good in this life and in the next one .
can drinking collagen cause scleroderma or it helps?????
@@Xray858 check with Dr. Brooke Goldner. Check her personal testimony
She really want patients to get well. And has a great success rate.
Wow thanks for sharing knowing you lived with this for 14 years is hopeful 🙏🏼 I just got diagnosed
@@claudiacastroyaya9504 You are welcome I am also training my own service dog She assists me with activities of daily living, as well as alerting my family when I am choking. She saved my life once by jumping on my back,which helped to expel the food from my trachea, so I could breathe again! She also helps me with disease related anxiety, plus is now learning public access. She to visit me when I am in hospital. She is just what us scleroderma-fighters need!
I'm scared of this disease.I pray for a cure and treatments to stop or slow down immensely the collagen overproduction. 🙏🏽
I'm praying for you Chloe! May you be blessed with complete healing in Jesus name 🙏 💖
Life goes on and the Brits, who coined the term (during what were very dark times) "Keep Calm & Carry On" are pros at this.
Well done SRUK, for these uplifting, informative videos that reveal the most important thing of all, that life does go on.
My very, very best wishes to Chloe & Danny. I wish good health and happiness to you both and a long life together.
What a gem she is. Glad I ran across this video. Hope you're still well.
Hope things are getting better for you. Bless🙏🙏🙏
Hi I've just been diagnosed after 8years of having to pester the GPS and even now just cause I've been diagnosed I'm still getting no help with medication or any kind of help I'm so poorly amd stressed and don't know what to do x
Had it 6 years now. Has various stages, flare ups, everyone is different.
I have scleroderma too and know it's hard, I hope you get better Chole
Hi You are a lovely person and so lucky to have your family around you.
My story is much the same, and just very slowly i have more skin issues but also mainly because I am a redhead and experienced so much sunburn growing up. Mainly over time I have had some lupus crossover issues but being positive about what you do have in your life and do not suffer from today is the best gift any medicine could give you…Food and love is your medicine. I am so happy fo you. Congrats‼️
Chloe, I understand you take care off everyone, without thinking of yourself, and I’ve done so since age 14. I’ve only been in testing for a few months, and my doctor gets upset when I search out information. As you said, there can be a lot of unfounded garbage on the net, so it’s best to be careful. With a sinking feeling that this illness may be scleroderma, I’m keeping a positive attitude, and becoming a hypnotherapist in the hopes of at least curbing whatever ails my body. My prayers are with you as I continue fighting and staying positive. (Hope your marriage stays as gleeful and positive as you.)
Hello yes a lot of garbage on google. Dr told me I have scleroderma ţo. I think the main reason is traumas that we have emotional stress ..i think the cure is in ourselves .and I think body can heal itself
How are doing today? I hope you are ok
My mother passed away of this' illness
How many year she lived with it after she was diagnosisd
@@ayushpatel8989 she lived around 21year.....last 6year so painfull....this dieses last stage oxygen...
@@dharapatel1538 kya wo intestinal lungs disease se safar kar rahen the
@@smileeasyeverydayperfectio5682 yes
It's amazing what your doing. Look up the herb kalawalla :)
Are you in Cypres Texas. We are just trying to get the Diagnosis part right now. Your video was very helpful to me and my wife. My wife is the one with the condition. We would love to communicate with you more on this subject
Chloe do you reply.
As I'm in desperate situation 🙏🙏🙏🙏.
Please talk to me🌺💓
God bless you with health and joy:)!
What medicines do they have you on. I feel like a guinea pig at times when it comes to this disease.
Please check on youtube for a most impressive personal testimony of Dr. Goldner and th ed vtestkn uh of those she's helped
hello , I use to go to a support group for Lupus and Collagen Disease s . I am aware of it . 2 women had it . Mine is Dermatomyositis since 1991 . I get IVIG s for it . Have you tried it ?
Have you tried the AP Protocol? Henry Scammel wrote a book on the specifics. The use of Minocycline with RA, Lupus and Scleroderma has proven successful for many. Wishing you the best!
This treatment worked for me. Within 12 months I went from deaths door to normal blood tests. Then using yoga, nutrition and lifestyle changes I maintained normal internal health for the past 25 yrs. I recommend this as a least harsh effects on the internal organs, low dose antibiotics is a cure imo. The source might be like Lyme disease ie a parasite or infection
Congratulations on your 💍 engagement. 👍🏾❣️ From the USA
I just got diagnosed…
I have it, too. I will pray for you ♥️🇺🇸
I m a sclerodarma patient.... I m from India... Plz give some sujjetn on it... It's very difficult to live with sclerodarma....
Use subliminal for it...
Go to You tube " meme scleroderma"
Listen it for few months..
Go for Ayurvedic treatment,m also suffering from this
@@cuppingshorts.1365 any improvement
@@poonamkrishna7057 alot
@@poonamkrishna7057 I tried almost everything including Ayurveda but failed,den one of my friend took me to Chennai Apollo der one dermatologist suggest me s.n.pandit health care Dr.ranjini she changed my life completely
I've been suffering with this for 3 years and can not get a diagnosis. Can anyone reccomend a place where they have a clue? I have systemic version. I am getting diagnosed with one thing at a time. The rheumatologist here in pa don't believe in ana negative autoimmune. I am close to suicidal because I can't get treated. I have shiny skin, liver, kidney involvement. I tested positive for ssa/ssb and can't even get a sjorgens diagnosis due to neg ana. My hands turned red, bottom of feet, it caused high blood pressure and they are blaming that for redness. It's crazy. They treating my like hypochondriac. My face has turned into leather. I could go on for days with what all is involved. You already know if you have systemic. My voice completely changed last month. I have problems with every gland I have. I really need a dr who knows about this.
Blood test
Blessings Beautiful 🙏🏻❤️
I need help can any one tell me what are the exercises that are useful for scleroderma
We've got a number of articles on our website about physio for scleroderma. Here's our most recent one: www.sruk.co.uk/about-us/news/physiotherapy-why-what-how/
HVe you looked into Photopherisis treatments “?.
Try the carnivore diet for one month.
I am 29 years old diagnosed systemic sclerosis and overlap syndrome
Hi! I have the Limited. How are you? I was diagnosed the last year. 😢
@@Murat-eq3crHi! Sorry for the late reply. I have just seen your message. What type of scleroderma do you have? I'm very scared of this disease. 😢 It's difficult. Where are you from?
@@lillyrocks2011 i am from Turkey i have overlap scleroderma mix connective tissue disease rheumatoid arthritis lupus antiphospholipid syndrome and scleroderma
@@Murat-eq3cr wow! I have been diagnosed mids 2022, the last year but I have more symptoms so I suspect I have something else than only scleroderma.
And since when and how were you diagnosed? How old are you?
@@lillyrocks2011 since 1.5 years i have symptoms but i do not have skin sclerosis more i have arthritis and skin panniculitis joint pains finger arthritis redness allover body with itching attack i am 30 years old now
I do have a scleroderma and I find something to stop the production of the colagem .HALOFUGINONE.Its a chinese.
Who gave you the treatment and how are you feeling now ?
I just got diagnosed 🥺
Hi Cheryl, I know how you're feeling right now. You will be fine. Just take your doctors advice. I've been diagnosed a couple of months ago although I've been seeking for answers about my disease for about 3 years.
@@JUNNAPDC thank you so much
Read about halofuginone
@@CherylNkosi hi Cheryl, You don’t know me but just know you are amazing and strong. Love and support from Philadelphia ❤
How are you?
Do you get an infusion in hospital with in example ilomedin? This medicine helps to increase the blood circulation in the vessels - it should help to reduce raynauds attacks.Some patients feel that it helps some not.I do this procedure twice a year and since I have done this at least I am not feeling tired anymore. 👍
I had the infusion where I live in New Zealand. It was awful - 6 hours a day for a week. I suffered a lot during it and it did not help my raynauds. Caryl
Thank you!
does tight skin always mean scleroderma?
I can meet u mujhe bhi h
Recently I found my boyfriend have scleroderma....what should I do?? Please suggest me will I leave him or marry him.
He needs to be loved and supported. If you are not willing to do that, then you don't deserve his love.
If you have to ask yourself that then do him a favor and just leave.
Horrible mentality
Speak English before you comment
Pathetic question.