I found your video when looking for videos on schleraderma. I’m 35 a wife & mother of 6 kids ages 3-13. I have been sick since 2011,and nobody knew what was going on told me it was lupus,and I had an uncle that was suffering from horrrible schleraderma he ended up passing. (We weren’t blood related),after his death in 2018 I was diagnosed w schleraderma and mine seems to be worsening by the hour I’m already on oxygen 24/7. It’s very scary as I don’t have parents but I have my husband snd young kids. You have given me some hope in watching your videos. My thoughts and prayers are with you. I’m not in the best place w all of this I hope I can be like you at some point. Your a true inspiration to me
Sorry to hear about this but have heard when such incurable disease occur where allopathy fails ,Yoga & more importantly Pranayama which includes deep breathing, Anulom Vilom, pranayam ,kapal bhati pranayam , meditation, diet and lifestyle change an lead to cure. Please give yourself a chance to Ayurveda or naturopathy. May take time but you have nothing to lose!💛💛💛🤗
@@Italianqueen Hope & God is the only thing we got dear☘️ Be strong & you are not alone!you can reverse it 💪 Do little research and start with Yoga & Pranayam immediately. Who knows you may turn into an inspiration and help others too.🙏🏻 Any help needed you can always comment. God bless 🤗
@@V_7126 Do you happen to know of anything that helps reverse it? I don’t even know where to start I research so much but all the doctors want to do is start me on all these medication that causes kidney failure and make me feel awful. And I don’t see how that can be very helpful? What is your take on these meds
@@Italianqueen Hi, I was also diagnosed with Lupus but by myself I discovered it was Scleroderma Lim. I haven't got treatments. Here is very unknown and doctors are very like ignoring me, and it's been a hell. How are you? What are your treatments?
@@lillyrocks2011 Yes it’s so hard. Most doctors aren’t very educated half of them don’t even know what scleroderma is. I was just hospitalized from having two digital ulcers on my index and middle finger that got infected and now I literally cannot move either of them anymore on my right hand. This disease is so scary. But I have switched my doctors to Cleveland clinic where a lot of them are scleroderma doctors so I’m really hoping to get a lot of help and treatment with my illness there.
I am 36 and was recently diagnosed with advanced systemic sclerosis and interstitial lung disease and found this things very helpful for my symptoms: Quit gluten, kombucha every morning on an empty stomach, eating plenty of meat and greens, swimming, bike riding, daily hands exercises and coconut lotion for my skin. Along with the calcium suppressor and colchicine that my doctor prescribed (minimum dosage). I also make sure to have my Vitamine D on recommended levels always and don't consume sugar (I wasn't consuming sugar even before I was diagnosed). I feel A LOT better then before I was diagnosed and my hands have visibly improved and have a lot more mobility. I feel like I am still able to live a full live and feel very positive about my future and about my life in general. I really hope this helps somebody. Hang on!
Please consider taking glutathione oral and nebulized. Depleted glutathione along with the excessive reactive oxygen species in connective tissue disorders lead to fibrosis. Glutathione is low in people like us. Tons of medical studies are out there on glutathione and autoimmune diseases. Ivermectin may also help. They've been using it for MS with great results. Its anti inflammatory and affects different immune pathways in autoimmune diseases. It's also been studied for it's anti cancer properties.
@@rizzobitz Thank you so much! Will def check out! I’m doing Keto and fasting to restore my system and it’s making me feel really good too. Luckily i have been able to keep my inflammations levels extremely low since being diagnosed with lifestyle modifications. Also I’m extremely more flexible now and my knees don’t hurt anymore at all actually.
Hi all, Thank you sharing your stories I feel this is what I'm dealing with, my fingers tips turning white with lose of feelings and the stomach issues are my signs so far!
It's a bad sickness my daughter had it afact your kidney it's a horrible after 4 years she passed away but we must remember we are only part-time on this Earth whether you healthy or sick we have to die nobody is here forever that road is for everyone there is only one hope is in Jesus he is our hope
I was diagnosed 3 yrs ago, slowly losing the use of my hands and mouth very tight now. Horrible illness and equally horrible treatment. I live on chemo drugs & will for rest of my life but its not stopping its progression. Hospital care is now reduced to 10mins every two years & no more heart or lung scans. My doctors don’t understand the condition so always tell me to call the hospital. My biggest problem & most stressful time now is getting sufficient care. However, my condition is horrible but there are many people far worse off than me.
My friend Susan came down with this when she turned 40. She died in 4 months. 40 years later I have never forgotten her. Never give up though, there has to be better medications for this now.
Diane I am going for biopsies this week then to scleroderma clinic as they think I have this terrible disease . At the moment I am in lots of pain and now have limited movement in both my arms. I'm seeing the rheumatoid consultant next month and hope to find out what is the results of my tests etc. As well as having pain and lack of movement I am also breaking out with lots of sores all over my body and some have turned septic so I'm having them dressed weekly at the clinic.i don't know what it is but I seem to know you as you look very familiar? I'm from Walton Liverpool and once worked at Walton hospital so don't know if I know you from there ? I hope you are feeling better soon and I will keep you up to date with my treatment God Bless x
10 days after “chemotherapy,” you were admitted to ICU. Was methotrexate the drug they administered? It is difficult not to think the “chemo” resulted in the renal crisis.
Agreed. Doctors need to be more clear with patients about what these drugs are and their side effects. My rheumatologist didn't tell me methotrexate can spike my risk for cancer, which I eventually got. :(
I was thinking the same. I was just diagnosed yesterday. Chemo...seriously? They are causing reactive oxygen species in a disease that progresses due to reactive oxygen species. What about glutathione oral and nebulized (for fibrosis prevention)? Glutathione is low in people with connective tissue disorders. Ivermectin has done miracles for MS and other autoimmune diseases, may help with scleroderma. What about immunoglobulins? IVIG help without damaging your immune system. Treatment options are so horrible they are worse than the disease itself. What's next, cyanide pills?
Whatever happen to First do no Harm? Unfortunately, chemotherapy is used all too often even when there is no protocol for it. I am glad that you recovered. Have you considered a holistic approach?
I am recently diagnosed with systemic sclerosis. I would like to meet other people who has been diagnosed with same condition. I live in Manchester. Please send me a message how to go about that??
Hi Kanchana! If you give us a ring on 020 3893 5998 or email info@sruk.co.uk and tell us your full name, email address/phone number and that you'd like to join a group near you, we'll be able to set that up for you :)
Actually this is an illness that causes rigidity in the muscles and joints in addition to lung inflammation. Yoga, which I tried several times, is actually harmful for someone with this condition.
I found your video when looking for videos on schleraderma. I’m 35 a wife & mother of 6 kids ages 3-13. I have been sick since 2011,and nobody knew what was going on told me it was lupus,and I had an uncle that was suffering from horrrible schleraderma he ended up passing. (We weren’t blood related),after his death in 2018 I was diagnosed w schleraderma and mine seems to be worsening by the hour I’m already on oxygen 24/7. It’s very scary as I don’t have parents but I have my husband snd young kids. You have given me some hope in watching your videos. My thoughts and prayers are with you. I’m not in the best place w all of this I hope I can be like you at some point. Your a true inspiration to me
Sorry to hear about this but have heard when such incurable disease occur where allopathy fails ,Yoga & more importantly Pranayama which includes deep breathing, Anulom Vilom, pranayam ,kapal bhati pranayam , meditation, diet and lifestyle change an lead to cure.
Please give yourself a chance to Ayurveda or naturopathy.
May take time but you have nothing to lose!💛💛💛🤗
@@Italianqueen Hope & God is the only thing we got dear☘️
Be strong & you are not alone!you can reverse it 💪
Do little research and start with Yoga & Pranayam immediately. Who knows you may turn into an inspiration and help others too.🙏🏻 Any help needed you can always comment.
God bless 🤗
@@V_7126 Do you happen to know of anything that helps reverse it? I don’t even know where to start I research so much but all the doctors want to do is start me on all these medication that causes kidney failure and make me feel awful. And I don’t see how that can be very helpful? What is your take on these meds
@@Italianqueen Hi, I was also diagnosed with Lupus but by myself I discovered it was Scleroderma Lim.
I haven't got treatments. Here is very unknown and doctors are very like ignoring me, and it's been a hell.
How are you?
What are your treatments?
@@lillyrocks2011 Yes it’s so hard. Most doctors aren’t very educated half of them don’t even know what scleroderma is. I was just hospitalized from having two digital ulcers on my index and middle finger that got infected and now I literally cannot move either of them anymore on my right hand. This disease is so scary. But I have switched my doctors to Cleveland clinic where a lot of them are scleroderma doctors so I’m really hoping to get a lot of help and treatment with my illness there.
I have this too, it's tough, I'm lucky my internal organs seems to be working properly so far..
When were you diagnosed?
🙏♥️
Diane, are you a candidate for step cell therapy?
I wish you the very best. You make me (very, very) proud to be British.
I am thankful that you are well now. I am struggling for my mom's health.
I am 36 and was recently diagnosed with advanced systemic sclerosis and interstitial lung disease and found this things very helpful for my symptoms: Quit gluten, kombucha every morning on an empty stomach, eating plenty of meat and greens, swimming, bike riding, daily hands exercises and coconut lotion for my skin. Along with the calcium suppressor and colchicine that my doctor prescribed (minimum dosage). I also make sure to have my Vitamine D on recommended levels always and don't consume sugar (I wasn't consuming sugar even before I was diagnosed).
I feel A LOT better then before I was diagnosed and my hands have visibly improved and have a lot more mobility. I feel like I am still able to live a full live and feel very positive about my future and about my life in general.
I really hope this helps somebody. Hang on!
Sounds like great advice Anyoli! Our latest video might be of interest - it covers the impact of nutrition on Scleroderma.
@@WeAreSRUK Great! Will check it out. Thank you!
Please consider taking glutathione oral and nebulized. Depleted glutathione along with the excessive reactive oxygen species in connective tissue disorders lead to fibrosis. Glutathione is low in people like us. Tons of medical studies are out there on glutathione and autoimmune diseases. Ivermectin may also help. They've been using it for MS with great results. Its anti inflammatory and affects different immune pathways in autoimmune diseases. It's also been studied for it's anti cancer properties.
@@rizzobitz Thank you so much! Will def check out! I’m doing Keto and fasting to restore my system and it’s making me feel really good too. Luckily i have been able to keep my inflammations levels extremely low since being diagnosed with lifestyle modifications. Also I’m extremely more flexible now and my knees don’t hurt anymore at all actually.
@@rizzobitz where is this research, could you please recommend or link? Ty! 🙏🏻
Hi all,
Thank you sharing your stories I feel this is what I'm dealing with, my fingers tips turning white with lose of feelings and the stomach issues are my signs so far!
I have systemic and I get so exhausted with it.
It's a bad sickness my daughter had it afact your kidney it's a horrible after 4 years she passed away but we must remember we are only part-time on this Earth whether you healthy or sick we have to die nobody is here forever that road is for everyone there is only one hope is in Jesus he is our hope
I was diagnosed 3 yrs ago, slowly losing the use of my hands and mouth very tight now. Horrible illness and equally horrible treatment. I live on chemo drugs & will for rest of my life but its not stopping its progression. Hospital care is now reduced to 10mins every two years & no more heart or lung scans. My doctors don’t understand the condition so always tell me to call the hospital. My biggest problem & most stressful time now is getting sufficient care. However, my condition is horrible but there are many people far worse off than me.
I feel you. It's worse when the treatment is poor as well.
My friend Susan came down with this when she turned 40. She died in 4 months. 40 years later I have never forgotten her. Never give up though, there has to be better medications for this now.
Diane I am going for biopsies this week then to scleroderma clinic as they think I have this terrible disease . At the moment I am in lots of pain and now have limited movement in both my arms. I'm seeing the rheumatoid consultant next month and hope to find out what is the results of my tests etc. As well as having pain and lack of movement I am also breaking out with lots of sores all over my body and some have turned septic so I'm having them dressed weekly at the clinic.i don't know what it is but I seem to know you as you look very familiar? I'm from Walton Liverpool and once worked at Walton hospital so don't know if I know you from there ? I hope you are feeling better soon and I will keep you up to date with my treatment God Bless x
I have it too. Dread what is coming
Same. 😏 How are you doing today?
I've also
I have this to.
10 days after “chemotherapy,” you were admitted to ICU. Was methotrexate the drug they administered? It is difficult not to think the “chemo” resulted in the renal crisis.
Agreed. Doctors need to be more clear with patients about what these drugs are and their side effects. My rheumatologist didn't tell me methotrexate can spike my risk for cancer, which I eventually got. :(
I was thinking the same. I was just diagnosed yesterday. Chemo...seriously? They are causing reactive oxygen species in a disease that progresses due to reactive oxygen species.
What about glutathione oral and nebulized (for fibrosis prevention)? Glutathione is low in people with connective tissue disorders. Ivermectin has done miracles for MS and other autoimmune diseases, may help with scleroderma. What about immunoglobulins? IVIG help without damaging your immune system.
Treatment options are so horrible they are worse than the disease itself. What's next, cyanide pills?
Can you survive more than 10 years? My mom has this she was diagnosed yesterday, April 4, 2018
It depends on the rate of progression of the disease. The range is very wide from 1 year to 20 or more.
Zuko Dragon oh ok, thanks.
hugs. thinking of you and your mom
Depends on d severity of the disease..... I m Indian jst 27
.suffering since 9 years!!!
My grandmother developed this in her twenties and lost movement in her hands and fingers but lived to be 77 yrs
Whatever happen to First do no Harm? Unfortunately, chemotherapy is used all too often even when there is no protocol for it. I am glad that you recovered.
Have you considered a holistic approach?
I have it it affects my intestines
I am recently diagnosed with systemic sclerosis. I would like to meet other people who has been diagnosed with same condition. I live in Manchester. Please send me a message how to go about that??
Hi Kanchana! If you give us a ring on 020 3893 5998 or email info@sruk.co.uk and tell us your full name, email address/phone number and that you'd like to join a group near you, we'll be able to set that up for you :)
Please look up kalawalla .
Raintree formula, but other brands are available
🙏♥️
I have this as well, it’s a horrible disease
Guys please do yoga especially pranayams kapalbhati and anulom vilom 20 minites each
Will definitely show results in 3 to 4 months
I never did yoga and my systemic scleroderma is fine.
Saurav dhami are you also suffering from this disease???
Sunshine is it cured now.. Totally????
Actually this is an illness that causes rigidity in the muscles and joints in addition to lung inflammation. Yoga, which I tried several times, is actually harmful for someone with this condition.
Interesting because my daughter was recently diagnosed and her Dr said practice light yoga
Call Dr. Sebi or Dr. Robert morse off.