I have sceroderma and raynaulds disease and had 5 strokes from the medicines they had me on..it has effected my stomach,lungs and heart. I won't let this disease control me..I workout, eat right and take nedications and vitamins and use plenty of lotion on my skin. I Protect my body from the cold even use electric blanket..
i suffer from this idk what to do i went off my methotreczate because pain was to much i need help i hurt every morining whehn i wake idk what to do my stomach is warm all the time inside idk what to do:'(
@CRUSHER2983 what about taking cellcept? thats what i take with Methotrexate... becasue methotrexate makes me very sick when i take it in large doses...
You have a beautiful film made with wonderful text . My name is Xandra Dekker and I'm also Scleroderma patient. In the Netherlands is little information to find about Scleroderma. That's why I started a blog. Here I have put a lot of information about Scleroderma and your videos posted there. gelukkige-vlinder.50plusser.nl to find out all about Scleroderma on my weblog and everything I enjoy.
Mine started when I was 5. I think it is related to a vaccine. Mine was dormant for about 30 years, till I got a flu shot....then it became active again. Food allergies seem to make it worse.
Mine started when I was 5. I think it is related to a vaccine. Mine was dormant for about 30 years, till I got a flu shot....then it became active again. Food allergies seem to make it worse.
I am a scleroderma patient and just want to thank you for this video and I will share it with my friends and family so they know what I am goin through, great informational video!!
@eilaseel first of all every patient differ from the other so one needs to see the docter for the same as the oral medication may differ but the I.V remains the samet thats Cyclophospomide 500mg+25ml Meridecca(steroid) first day and then 2nd and 3rd day only Meridecca 25ml and for 1.5 years the same treatment would ensure that it never comes back...any other query feel free to ask.
for all who are concerned there is a miracle in the field of medicine in INDIA...here a team of docters found out the cure and my sister is one of the lucky patients who is under their treatment....we called her from chicago(usa) to get her the benefits.who ever is in need pls contact on +91-9810528006...i would love to help!
@asbawaexports hi friend! if you know about a cure, tell about it! how does it work? many diseases are caused by wrong diet, meaning bad food so you don't get all nourishment the body needs. i have seen many sick people getting cured from asthma, allergies, rheuma, migraine, fibromyalgi, psoriasis, diabetes etc etc.... just by skipping junk food and using vitamins, minerals and enzymes that make the digestion work right.
I'm not the only kid to have this :D Im just very thankfull and blessed that its only localized in my left arm and shoulder. But it does make it difficult because im a guitar player and playing brings so much joy to me. But This are going great anyways! Its kinda cool because my whole arm looks like it got beat with a bat and people are like "Woah how'd you bruise your arm" and i say "Its not bruised, its a disease." Its a great way to get the ladies attention ;) Gotta make the best out of life!
thank you so much for posting this.i was diagnosed with this curse 15 years ago and my life has to tally changed because of scleroderma.people need to know about this and start caring.i would give anything ,i would do anything for a cure.
I admire your courage and your video is excellent. You are beautiful and you inspired me,a fellow patient. I can relate to many of the things you speake about. I have had Pary Romberg since 11 and I am now 46 and have a pretty mormal life. I am blessed to have two healthy daughters, I advocate for rare diseases and Parry Romberg Syndrome. Thank you for this video, Cheryl Rick Klein
Thank you My brother Walied was diagnozed in Oct 2007 by March 2009 he was dead . Since 2006 he was mis diagnosed, He got pneumonia and between the pneumonia and the scleroderma he lungs failed
my mother has lived with scleroderma for 15 years now...she has been through multipule surgeries that has left her with no fingers on her hands or feet... she even had to have half of her right foot removed because the tissue died and withered and turned black.
if you have scleroderma, please check out The Roadback Foundation. you can be cured. i'm on my "road back" right now and it's so much better and more effective, and MUCH safer, than traditional treatments. it's called the antibiotic protocol and it's all FDA approved, but since it's not the textbook way of treating scleroderma, most doctors are afraid to give it a shot. please, just check it out and make the decision for yourself. don't be afraid to fight for yourself. and never, never give up.
Im 15 and ive had this since i was 8. I started to notice it when my leg would turn a bright red after taking a shower. Since a took hot showers we didnt think it to be very serious until a few years down the road. It started to turn a dark colour and a stripes appeared along my right torso. It has gone from a dark purple to more of a light veiny look on my leg but my stomach can still be very dark or kinda light depending on the day
I have had generalized morphea also known as generalized scleroderma on my tailbone and have had it gor 5 years now! It es one onf the most painful things ive ever experianced in my life seeing as how i sit down all day at school in horribly hard chairs. I did some research trying to figure out if i can possibly get scleroderma and it said i could possibly. I really need to know the symptoms becasuse it seems like the pain increases everyday! If you can help, please contact me! <3
I started getting symptoms at age 29 and i'm now 43. Dr started me on methotrexate and plaquenil. Decided I didn't want that longterm, so quit everything, then researched a book I found about antibiotic treatment for these types of illnesses. My dr agreed to try it. It actually worked. Please research and give it a try. You have to be patient as it takes a couple months to take effect. I highly recommend. Now I only take a med for ulcers in dig tract.
Hyperbaric Oxygen Therapy (HBOT) is now available in a private clinic in Mississauga, Ontario which is a suburb just west of Toronto at Under Pressure Inc. The Hyperbaric Healing Centre. HBOT is a FDA/Health Canada approved treatment for non healing wounds. 905-274-2032
I hav been 2 the doctors concernin light patches which hav been developin on my arms, back and stomach. The patches show up more aftr exposure to the sun but r becomin larger and spreadin. I hav been to the doctors 4 blood tests 4 countless numbers of things. (constantly tired, chest infections, kidney infections, blisters to my hands) but nothin has been diagosed 2 date. They r testin me 4 this disease next week. can any1 giv me information on the different forms of Scleroderma?
hey guys - i think i may be developing sclero and have been searching the net to figure out what's going on. one thing i came across was the potential link between the condition and a kind of bacteria. anyways, i figured some of you might find this helpful and if you google 'scleroderma antibiotic therapy' you can read more about it.
My Systemic Scleroderma started at age 29, I am now 45. It started with swelling of my hands and then the swelling went up into my arms which soon became so weak, my hands and arms harden up just from simple writing or using a spray can. I sleep about 18 hours a day and have unbelievable aching pain! Walking to the mail box or to the store takes everything I have, pain medicine is all i can take and it makes it worse. I am very irritable and depressed when not on pain meds.
I am a scleroderma patient. I live in Australia. My sleroderma has progressed to include peripheroral polyneuropathy, I had Raynards first. I was diagnosed in 1991. I am now being kept "comfortable" with pain medication. 5 members of my family have passed from this disease. It is hereditary, and mor prone to European people. I am Greek. I am looking for a support group to discuss this disease for support. To give and receive.
I hope I don't have this. She explained a lot of my symptoms. I must do more research on this.2 doctors said I have Lupus and prescribed steroids .I refuse to believe them . Two different doctors made the determination in about 4 minutes of seeing me. these doctors around me are all Pill pushers and want bi-weekly appointments to get you back to their office . Something is not right here in the USA.
I am 35 years old and I've had slceroderma sclerocis throughout five years now. I've taken methotrexate + Prednisone + a mass of digestive medicine. I'm not scared anymore. I feel like I'm dying, but it's the symptom of the disease. I'm in pain 60% of the day. I'm not working. But the good part is - I'm enjoying the fact that I can stand pain, other people cannot. Today I feel pretty good.
part 2... i just graduated last april and i took the nursing licensure exam last june and i made it. i am now a registered nurse.. but sclederma really bothers me.. i hav brown pigmentation and white pigmentation all over my body.. just want to ask f ders some meds who can help me.. i also have knee pain.. it really hurts..
hiii.... i also have scleroderma. im from philippines. i had it for 2years. it really bothers me a lot.. it affects my skin really bad and i think my self confidence is really on the rock... i really want to know d meds their taking to help prevent the disease from worsening... i hope i could have the email of charlote.. lots of question about her... hope she reads my comment and also d others who has scleroderma.. yeah... im also very happy dat i have very supportive family..
My son has systemic scleroderma. He has had it since 2000. We have gone through the alternative route. Please check out Xango Mangosteen...This is a powerful antioxident which helps the immune system. He recently got on it after a huge kidney scare. The mangosteen lowered his high blood pressure a great deal! Also check out colostrum..this is the first milking of the cow. It increases fluidity!
I, too, have been diagnosed with Scleroderma. God Bless you for making this video. I am 47 yrs old and my futures uncertainty surely does scare me. I have no husband or children.....and I fear who will CARE for me when I get worse? Im only hoping my nieces and nephews step up to the plate. God Bless you for making this video. May your life continue on with minimal pain, etc.
My older sister was diagnosed with scleroderma when she was 21 she was misdiagnosed a bunch of times and was told that she could never have kids, she had 2 their now 5 and 7. She got pneumonia last year and between the pneumonia and the scleroderma she passed away due to one of her main arteries busting from a cough and bleed into her lungs. she was 36 and she just passed away a couple of weeks ago. Thanks for making this disease known:)
Having had Scleroderma since I was 12 years old, I can certainly relate with this video. Thank you so much for producing it and hopefully someday we'll find a cure!
This is an excellent video. More people need to know about scleroderma! My BF mom battles Scleroderma. I battle lupus and it is also a lesser known disease, people don't understand this illness. I pray for a cure soon for both of these illnesses. I have so many bad days. I was so happy to see Mary share her story.
Thank you for the video. Stem Cell research, and application for this, and other illnesses are so important that there need be no red tape, or crazy religious criminals (George Bush & co.)deciding who should live, and how they should live.. and when they should die. I have had scleroderma now for 11 years..I am one of the lucky one's, and I would do anything for a cure.
I couldn't agree with you more. We need to learn to advance as a people without letting superstition get in the way. I am glad to hear that this video has meant something to you.
@sabu63 To be honest, there isnt going to be a cure, I have it so i can say this with a smile on my face :) <------- See? Now, how bout instead of complaining you make the best out of the life you got :D
very courageous young lady. i really applaud your morale . . we should all be verycareful coz we dont know when n where we will get a disease. its sometimes some disease that look material but they arent! they r sometimes spiritual as some meta physical things might be inhabiting the body of human and harming it in some other way which is apparent in some other way. try to comprehend my statement
I have sceroderma and raynaulds disease and had 5 strokes from the medicines they had me on..it has effected my stomach,lungs and heart. I won't let this disease control me..I workout, eat right and take nedications and vitamins and use plenty of lotion on my skin. I Protect my body from the cold even use electric blanket..
linda32060 1 month ago
i suffer from this idk what to do i went off my methotreczate because pain was to much i need help i hurt every morining whehn i wake idk what to do my stomach is warm all the time inside idk what to do:'(
CRUSHER2983 4 months ago
@CRUSHER2983 what about taking cellcept? thats what i take with Methotrexate... becasue methotrexate makes me very sick when i take it in large doses...
totallytang2010 4 months ago
My father has scleroderma from last 20 years his hands and feet are numb with lot of pain. Is there any cure for numbness?
rohitkhanna11 5 months ago
This has been flagged as spam show
You have a beautiful film made with wonderful text . My name is Xandra Dekker and I'm also Scleroderma patient. In the Netherlands is little information to find about Scleroderma. That's why I started a blog. Here I have put a lot of information about Scleroderma and your videos posted there. gelukkige-vlinder.50plusser.nl to find out all about Scleroderma on my weblog and everything I enjoy.
Strength and greetings from Xandra
XandraDekker 7 months ago
This has been flagged as spam show
Mine started when I was 5. I think it is related to a vaccine. Mine was dormant for about 30 years, till I got a flu shot....then it became active again. Food allergies seem to make it worse.
annonthebeach 9 months ago
Mine started when I was 5. I think it is related to a vaccine. Mine was dormant for about 30 years, till I got a flu shot....then it became active again. Food allergies seem to make it worse.
annonthebeach 9 months ago
I am a scleroderma patient and just want to thank you for this video and I will share it with my friends and family so they know what I am goin through, great informational video!!
hbcase2010 10 months ago
@eilaseel first of all every patient differ from the other so one needs to see the docter for the same as the oral medication may differ but the I.V remains the samet thats Cyclophospomide 500mg+25ml Meridecca(steroid) first day and then 2nd and 3rd day only Meridecca 25ml and for 1.5 years the same treatment would ensure that it never comes back...any other query feel free to ask.
asbawaexports 10 months ago
for all who are concerned there is a miracle in the field of medicine in INDIA...here a team of docters found out the cure and my sister is one of the lucky patients who is under their treatment....we called her from chicago(usa) to get her the benefits.who ever is in need pls contact on +91-9810528006...i would love to help!
asbawaexports 1 year ago
@asbawaexports hi friend! if you know about a cure, tell about it! how does it work? many diseases are caused by wrong diet, meaning bad food so you don't get all nourishment the body needs. i have seen many sick people getting cured from asthma, allergies, rheuma, migraine, fibromyalgi, psoriasis, diabetes etc etc.... just by skipping junk food and using vitamins, minerals and enzymes that make the digestion work right.
eilaseel 1 year ago
I'm not the only kid to have this :D Im just very thankfull and blessed that its only localized in my left arm and shoulder. But it does make it difficult because im a guitar player and playing brings so much joy to me. But This are going great anyways! Its kinda cool because my whole arm looks like it got beat with a bat and people are like "Woah how'd you bruise your arm" and i say "Its not bruised, its a disease." Its a great way to get the ladies attention ;) Gotta make the best out of life!
skiaspenboy 1 year ago
thank you so much for posting this.i was diagnosed with this curse 15 years ago and my life has to tally changed because of scleroderma.people need to know about this and start caring.i would give anything ,i would do anything for a cure.
vassiliki79 1 year ago
por favor alguien qe lo subtitule :S
07mattii 1 year ago
I admire your courage and your video is excellent. You are beautiful and you inspired me,a fellow patient. I can relate to many of the things you speake about. I have had Pary Romberg since 11 and I am now 46 and have a pretty mormal life. I am blessed to have two healthy daughters, I advocate for rare diseases and Parry Romberg Syndrome. Thank you for this video, Cheryl Rick Klein
cheryl05able 1 year ago
very sad but very informative... thanks for sharing
spooklefilms 1 year ago
I know what causes scleroderma. I know what causes the flare ups.
wwwRickytvcom 1 year ago
Thank you My brother Walied was diagnozed in Oct 2007 by March 2009 he was dead . Since 2006 he was mis diagnosed, He got pneumonia and between the pneumonia and the scleroderma he lungs failed
He wanted Stem Cell -Its hard
Thank you for your courage
TheNevertoolate 1 year ago
Thank you for sharing your story.
telltalehart 1 year ago
my mother has lived with scleroderma for 15 years now...she has been through multipule surgeries that has left her with no fingers on her hands or feet... she even had to have half of her right foot removed because the tissue died and withered and turned black.
XXXxxToshitsunexxXXX 2 years ago
if you have scleroderma, please check out The Roadback Foundation. you can be cured. i'm on my "road back" right now and it's so much better and more effective, and MUCH safer, than traditional treatments. it's called the antibiotic protocol and it's all FDA approved, but since it's not the textbook way of treating scleroderma, most doctors are afraid to give it a shot. please, just check it out and make the decision for yourself. don't be afraid to fight for yourself. and never, never give up.
steph743 2 years ago
i feel you i have it to painful just keep youre faith in god always.
db1995db 2 years ago
Wonderful video. Awareness = Knowledge = Power
TtownErica 2 years ago
Comment removed
neonman211 2 years ago
Wow...I feel like she's telling my life story.
FlickeringHalo 2 years ago
This has been flagged as spam show
Nice try. Keep it up check out esteembpo + com for social media marketing. jghj
QuentinTilley 2 years ago
This has been flagged as spam show
Nice try. Keep it up check out esteembpo + com for social media marketing. hgvg
isabngeryer 2 years ago
great video! loved watching it!
icyouhealth 2 years ago
My Sister-in-law has diffuse scleroderma in Australia. She was diagnosed about 6 years ago.
lizza67 2 years ago
My mother is suffering with this horrible disease. Thanks for spreading the message.
chikookhan 2 years ago
Im 15 and ive had this since i was 8. I started to notice it when my leg would turn a bright red after taking a shower. Since a took hot showers we didnt think it to be very serious until a few years down the road. It started to turn a dark colour and a stripes appeared along my right torso. It has gone from a dark purple to more of a light veiny look on my leg but my stomach can still be very dark or kinda light depending on the day
sync380 2 years ago
I have had generalized morphea also known as generalized scleroderma on my tailbone and have had it gor 5 years now! It es one onf the most painful things ive ever experianced in my life seeing as how i sit down all day at school in horribly hard chairs. I did some research trying to figure out if i can possibly get scleroderma and it said i could possibly. I really need to know the symptoms becasuse it seems like the pain increases everyday! If you can help, please contact me! <3
dominator7425 2 years ago
No one can diagnose you but a Dr. You really need to make an appointment.
mrslewis98 2 years ago
I started getting symptoms at age 29 and i'm now 43. Dr started me on methotrexate and plaquenil. Decided I didn't want that longterm, so quit everything, then researched a book I found about antibiotic treatment for these types of illnesses. My dr agreed to try it. It actually worked. Please research and give it a try. You have to be patient as it takes a couple months to take effect. I highly recommend. Now I only take a med for ulcers in dig tract.
tracya08 2 years ago
I know this video is a couple of years old. I hope you are doing well. I have been to hell and back and know how you feel
annieabra61 2 years ago
Hyperbaric Oxygen Therapy (HBOT) is now available in a private clinic in Mississauga, Ontario which is a suburb just west of Toronto at Under Pressure Inc. The Hyperbaric Healing Centre. HBOT is a FDA/Health Canada approved treatment for non healing wounds. 905-274-2032
HYPERBARICHYPERBARIC 2 years ago
I hav been 2 the doctors concernin light patches which hav been developin on my arms, back and stomach. The patches show up more aftr exposure to the sun but r becomin larger and spreadin. I hav been to the doctors 4 blood tests 4 countless numbers of things. (constantly tired, chest infections, kidney infections, blisters to my hands) but nothin has been diagosed 2 date. They r testin me 4 this disease next week. can any1 giv me information on the different forms of Scleroderma?
beth4tunes 2 years ago
hey guys - i think i may be developing sclero and have been searching the net to figure out what's going on. one thing i came across was the potential link between the condition and a kind of bacteria. anyways, i figured some of you might find this helpful and if you google 'scleroderma antibiotic therapy' you can read more about it.
swimfan88 3 years ago
My Systemic Scleroderma started at age 29, I am now 45. It started with swelling of my hands and then the swelling went up into my arms which soon became so weak, my hands and arms harden up just from simple writing or using a spray can. I sleep about 18 hours a day and have unbelievable aching pain! Walking to the mail box or to the store takes everything I have, pain medicine is all i can take and it makes it worse. I am very irritable and depressed when not on pain meds.
LiveByTruth101 3 years ago
I am a scleroderma patient. I live in Australia. My sleroderma has progressed to include peripheroral polyneuropathy, I had Raynards first. I was diagnosed in 1991. I am now being kept "comfortable" with pain medication. 5 members of my family have passed from this disease. It is hereditary, and mor prone to European people. I am Greek. I am looking for a support group to discuss this disease for support. To give and receive.
mariamarcellos 3 years ago
My daughter has systemic scleoderma for years.
Thank you for the video.
bethsheeba3 3 years ago
I hope I don't have this. She explained a lot of my symptoms. I must do more research on this.2 doctors said I have Lupus and prescribed steroids .I refuse to believe them . Two different doctors made the determination in about 4 minutes of seeing me. these doctors around me are all Pill pushers and want bi-weekly appointments to get you back to their office . Something is not right here in the USA.
FacialsRus 3 years ago
I am 35 years old and I've had slceroderma sclerocis throughout five years now. I've taken methotrexate + Prednisone + a mass of digestive medicine. I'm not scared anymore. I feel like I'm dying, but it's the symptom of the disease. I'm in pain 60% of the day. I'm not working. But the good part is - I'm enjoying the fact that I can stand pain, other people cannot. Today I feel pretty good.
freestayfree 3 years ago
part 2... i just graduated last april and i took the nursing licensure exam last june and i made it. i am now a registered nurse.. but sclederma really bothers me.. i hav brown pigmentation and white pigmentation all over my body.. just want to ask f ders some meds who can help me.. i also have knee pain.. it really hurts..
iceyzobelle 3 years ago
hiii.... i also have scleroderma. im from philippines. i had it for 2years. it really bothers me a lot.. it affects my skin really bad and i think my self confidence is really on the rock... i really want to know d meds their taking to help prevent the disease from worsening... i hope i could have the email of charlote.. lots of question about her... hope she reads my comment and also d others who has scleroderma.. yeah... im also very happy dat i have very supportive family..
iceyzobelle 3 years ago
My son has systemic scleroderma. He has had it since 2000. We have gone through the alternative route. Please check out Xango Mangosteen...This is a powerful antioxident which helps the immune system. He recently got on it after a huge kidney scare. The mangosteen lowered his high blood pressure a great deal! Also check out colostrum..this is the first milking of the cow. It increases fluidity!
martaanita 3 years ago
I, too, have been diagnosed with Scleroderma. God Bless you for making this video. I am 47 yrs old and my futures uncertainty surely does scare me. I have no husband or children.....and I fear who will CARE for me when I get worse? Im only hoping my nieces and nephews step up to the plate. God Bless you for making this video. May your life continue on with minimal pain, etc.
jing684 3 years ago
My older sister was diagnosed with scleroderma when she was 21 she was misdiagnosed a bunch of times and was told that she could never have kids, she had 2 their now 5 and 7. She got pneumonia last year and between the pneumonia and the scleroderma she passed away due to one of her main arteries busting from a cough and bleed into her lungs. she was 36 and she just passed away a couple of weeks ago. Thanks for making this disease known:)
jgd2420 3 years ago 3
I have scleroderma since 4 years and for your information, Notre-Dame Hospital in Montreal, Canada, has a specialized team for this disease.
paceart 4 years ago
Having had Scleroderma since I was 12 years old, I can certainly relate with this video. Thank you so much for producing it and hopefully someday we'll find a cure!
howsadiamtoday 4 years ago
my best friend has had the scleroderma for one year now so thanks for puttin the video and for talking about it
ncristina07 4 years ago
This is an excellent video. More people need to know about scleroderma! My BF mom battles Scleroderma. I battle lupus and it is also a lesser known disease, people don't understand this illness. I pray for a cure soon for both of these illnesses. I have so many bad days. I was so happy to see Mary share her story.
2Tall2BAShorty 4 years ago
i have scleroderma myself. i have had it for 14 years. i have had it sense i was 3 months old. RAISE THE AWARENESS
sciencewithseth 4 years ago
Thank you for the video. Stem Cell research, and application for this, and other illnesses are so important that there need be no red tape, or crazy religious criminals (George Bush & co.)deciding who should live, and how they should live.. and when they should die. I have had scleroderma now for 11 years..I am one of the lucky one's, and I would do anything for a cure.
sabu63 4 years ago 4
I couldn't agree with you more. We need to learn to advance as a people without letting superstition get in the way. I am glad to hear that this video has meant something to you.
mmazur1o5 4 years ago
@sabu63 To be honest, there isnt going to be a cure, I have it so i can say this with a smile on my face :) <------- See? Now, how bout instead of complaining you make the best out of the life you got :D
skiaspenboy 1 year ago
I took Methrotrexate for my schleroderma. it was teribble. now my sinus are all messed up.
murphy9238481 4 years ago
very courageous young lady. i really applaud your morale . . we should all be verycareful coz we dont know when n where we will get a disease. its sometimes some disease that look material but they arent! they r sometimes spiritual as some meta physical things might be inhabiting the body of human and harming it in some other way which is apparent in some other way. try to comprehend my statement
zeb120 4 years ago
Thank you so much for making this video. Raising awareness is sooo important.
I applaud your courage.
Stay warm and well, my friend.
Connie
NVtheDeals 4 years ago