15 years ago I became ill, at age 5. For years doctors could not diagnose what I had. I was finally diagnosed with Scleroderma and have struggled so much throughout my life. Staying strong hoping that one day there will be a cure.
In other words, they don't know shit, but are still looking. I've had linear scleroderma since I was 4 years old in 1990. I've been biopsied multiple times, given horrific levels of steroids, and seen specialists in many major cities in the US, all for them to tell me the same thing: manage your expectations because there is no cure. I commend the doctors who spend their time researching this, but I wish they would just be straight forward with patients instead of dancing around the issue.
Look into alt treatments. They only work with drugs so they can make money. Search Shrader’s and LDA and look into vit C, iodine, dmso and other herbals.
I suggest you start doing your own homework and listening to these kind of conferences and going to the main disease clip websites and joining Facebook groups with people who have the same diseases. research research research is the key to your well-being as I have found the hard way. And besides research is studies proving what research you believe to be true by looking to see if anybody else agrees with you
I understand your struggles. I got sick at around 5 years old but even getting the diagnosis took several years. Doctors had no idea what they were dealing with. I also got put on steroids that did so much damage to my physical and mental health.
6 yrs ago I was diagnosed as a scleroderma patient with raynaud syndromes .been 6 years taking medicines and i don't feel any development or changes instead I feel that it's more getting worse. Now I'm suffering of the thickness and dry/shiny skin. It is itchy esp when I'm expose in the sun. Feeling depress and losing self confidence cz of my skin discoloration.
Hi Neha: Unfortunately there is no cure for scleroderma at this time. However, progress has been made in treating two of the most life-threatening aspects of the disease: kidney function and lung function. Please visit www.scleroderma.org to learn more about the disease, its symptoms, and available treatments.
Sir I have been diagnosed with localized Scleroderma /morphea n my lessions are improving but also new lessions are forming on my leg n hands I am on Methoraxte and Taclorilmus cream also another vitamin D cream but I am scared I am just 24 n inspitr of taking medicines on time I cnt see much changes. Will my life continue to be like this😢 I am super tensed.
I am from Zambia (Africa) and I have had scleroderma (my skin is un-pinchable) for 16yrs and I've never been on any medication. I am 29yrs now and I still have it but it has gotten from worst to better. I have no skin lesions, but I would love to have a thorough diagnosis but my country has no specialist in this disease. I am more informed as a patient than the doctors. How can I access health care (tests and possible treatments) with Scleroderma foundation.
I'm glad you're more informed than the doctors and I am the same way and they resent it based on how I am treated. They don't know to ask anything prior to meeting me for the first time but once we start talking about what my problems are blah blah blah or if an anesthesiologist or nurse is going through a list of questions and things they can't even smell or have heard of the first thing every new doctor anesthesiologist nurse PA whatever asked me is am I a doctor. So I joke with them and tell them no I didn't stay at a holiday in last night though I just know how to do my research and pay attention. Unfortunately there's many doctors who do not like us Internet doctors but I'm sorry if I hadn't done this I'd already be dead. I'm not stupid I know how to do my own research and my retina surgeon and I sat together for hours discussing medical term analogy and diseases and what goes on in the medical community etc. etc. so now he makes may be his last patient which I enjoy because we sit there and I update him every quarter about what is going on with me now what my doctors are saying and what my thoughts are and he is always telling me to keep on fighting keep on doing proper research and get rid of the doctors that aren't doing me any good and that's exactly what I have done. However when they get nasty I will report them without hesitation and find a new doctor. I have one Doctor Who was sure I had lupus and the blood test proved it as well as other things and she refused to put it on my record because she didn't want it to be a pre-existing condition. After two rounds of that With her she was dumped as my rheumatologist and I went outside of our city to another city to see that rheumatologist and got answers in one day
I developed linear morphea over my forehead when I was 13. It then extended and a my lower lip too developed a depression. At this stage, when i was 15, the progress if the disease and further scaring had stopped. I'm 28 now, and there's a similar depression in that same line on my upper lip, which I believe is my morphea progressing. But the problem is I keep developing oral ulcer over that depression. Is it all related?
Mine is thick and white then turns brown purple. Ive been told its localized. It had been dormant for awhile and now its active again. It itches so bad.
I was diagnosed on the year 2003, I had steroid cream I used on my affected area at my face. also I have it at my back had steroid injection..I am from the Philippine s.
I have morphed. I was diagnosed at age 7. I am 48 now and still have active Morphea , Raynauds and life long digestive issues. My scars disappear exceptbforbmorphea. Mine is in torso and grows longer and curves around under my arm moving onto my back. I have never been able to find doctors who address this.
In the United States, you can find rheumatologists who specialist in all forms of scleroderma by searching the Designated Scleroderma Research and Treatment Centers located on the Scleroderma Foundation website: www.scleroderma.org/centers
I'm really suffering from this diseas ..I'm from Morocco ..My forhead is getting distorted and deformed and i don't want it to get to my check and lips ...i visited 5 doctors here in Morocco they gave me creme ..but noo result ..and i'm.realy scared to touch my brain and get more deformed ...Help pleaaase really hands folded 😭😢😭😭 what to do ? is there any régime to strengthen the immunity if does it help ?? to stop this lesion from progressing ..please please
Please check with your rheumatologist. Depending on the severity of the disease, the linear types of scleroderma are generally treated with corticosteroids and immunosuppressant medications. It is always best to consult your physician about which medication is best for you, because scleroderma can have varying progressions for each patient. If you fast forward to the 22:25 -25:30 minute mark of this video, Dr. York names a couple common medications such as Prednisone, methotrexate and mycophenolate. Please share this information with your rheumatologist to create and individualized treatment plan. You might have to consider surgery if there is disfigurement.
Debunking the connection with lime? I assume that it must be a coincidence that Lyme patients have this? I have the localized skin time I had Lyme and several people in my Lyme group also have it.. So much for debunking
Many diseases can overlap each other and symptoms that is why it is so important to run so many test and listen to the patient carefully about all of their symptoms small and large. The doctors only as good as the information you give them even if you don't think it's important and/ or they're only there to do the best they can and don't care about keeping up with current information on the Diseases they treat. You must be your own advocate and I can't stress that any harder
@@backtoblack8073 Morphea is a form of localized scleroderma characterized by waxy patches on the skin of varying sizes, shapes and color. The skin under the patches may thicken. The patches may enlarge or shrink, and often may disappear spontaneously. Morphea usually appears between the ages of 20 and 50, but is often seen in young children. Linear scleroderma is a form of localized scleroderma which frequently starts as a streak or line of hardened, waxy skin on an arm or leg or on the forehead. Sometimes it forms a long crease on the head or neck, referred to as en coup de sabre because it resembles a saber or sword wound. Linear scleroderma tends to involve deeper layers of the skin as well as the surface layers, and sometimes affects the motion of the joints, which lie underneath. Linear scleroderma usually develops in childhood. In children, the growth of involved limbs may be affected. Learn more at www.scleroderma.org
I have been diagnosed with Localized Scleroderma( Morphea) and Litchen . But, I don’t have the vagina or pubic area involvement. I also don’t have the thickness of the skin. I did have a biopsy early on in the disease. But, I was told they weren’t sure how to diagnose me. I’m taking Hydroxychoroquine 2a day. For 3 years now. Also, I occasionally use topical cream called Betamethasone Dipropinate which doesn’t seem to be doing anything. How can I stop the doctor from saying I have Litchen disease and focus on what I do have and do you treat both the same?
How is Localized Scleroderma Diagnosed? Doctors who are familiar with scleroderma, or who are experts at examining the skin, can arrive at the diagnosis without much difficulty after a careful examination. In some cases, further tests may be needed to confirm the diagnosis. These tests may include taking a small sample of the skin (a biopsy) and some blood samples. It’s important that the entire skin surface be examined, so that a complete record is made of what is present at first (baseline record). Photographic documentation is also valuable. scleroderma.org/resources-center/ Please find a list of scleroderma specialists here: Designated Scleroderma Research & Treatment Centers: scleroderma.org/find-a-treatment-center/ You may find these educational videos helpful: Medications in Scleroderma- Jessica Farrell, PharmD.- 2019 National Education Conference th-cam.com/video/vbhBuiHTzts/w-d-xo.html Scleroderma Tests, Dr. Richard Silver, MD: th-cam.com/video/hJsOSkxPhSo/w-d-xo.html Management of the Skin in Scleroderma: th-cam.com/video/kH1E3PBwQdQ/w-d-xo.html
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I am a scleroderma patient
..i am taking medicine...I am married..have 2 kids.38 years old.iam suffering since 2014..I want to be recovered fully.
15 years ago I became ill, at age 5. For years doctors could not diagnose what I had. I was finally diagnosed with Scleroderma and have struggled so much throughout my life. Staying strong hoping that one day there will be a cure.
In other words, they don't know shit, but are still looking. I've had linear scleroderma since I was 4 years old in 1990. I've been biopsied multiple times, given horrific levels of steroids, and seen specialists in many major cities in the US, all for them to tell me the same thing: manage your expectations because there is no cure. I commend the doctors who spend their time researching this, but I wish they would just be straight forward with patients instead of dancing around the issue.
What kind of steroids. I have skin morphea soft skin
Look into alt treatments. They only work with drugs so they can make money. Search Shrader’s and LDA and look into vit C, iodine, dmso and other herbals.
I suggest you start doing your own homework and listening to these kind of conferences and going to the main disease clip websites and joining Facebook groups with people who have the same diseases. research research research is the key to your well-being as I have found the hard way. And besides research is studies proving what research you believe to be true by looking to see if anybody else agrees with you
I understand your struggles. I got sick at around 5 years old but even getting the diagnosis took several years. Doctors had no idea what they were dealing with. I also got put on steroids that did so much damage to my physical and mental health.
6 yrs ago I was diagnosed as a scleroderma patient with raynaud syndromes .been 6 years taking medicines and i don't feel any development or changes instead I feel that it's more getting worse. Now I'm suffering of the thickness and dry/shiny skin. It is itchy esp when I'm expose in the sun. Feeling depress and losing self confidence cz of my skin discoloration.
I have this and mine is pressing on my nerves. I need this Dr to help me!
Is this curable ?? I’m also suffering from this disease since 2008 and now I’m 24 ..
it’s really depressing
Please help
Hi Neha: Unfortunately there is no cure for scleroderma at this time. However, progress has been made in treating two of the most life-threatening aspects of the disease: kidney function and lung function. Please visit www.scleroderma.org to learn more about the disease, its symptoms, and available treatments.
Sir I have been diagnosed with localized Scleroderma /morphea n my lessions are improving but also new lessions are forming on my leg n hands I am on Methoraxte and Taclorilmus cream also another vitamin D cream but I am scared I am just 24 n inspitr of taking medicines on time I cnt see much changes. Will my life continue to be like this😢 I am super tensed.
I am from Zambia (Africa) and I have had scleroderma (my skin is un-pinchable) for 16yrs and I've never been on any medication. I am 29yrs now and I still have it but it has gotten from worst to better. I have no skin lesions, but I would love to have a thorough diagnosis but my country has no specialist in this disease. I am more informed as a patient than the doctors. How can I access health care (tests and possible treatments) with Scleroderma foundation.
I'm glad you're more informed than the doctors and I am the same way and they resent it based on how I am treated. They don't know to ask anything prior to meeting me for the first time but once we start talking about what my problems are blah blah blah or if an anesthesiologist or nurse is going through a list of questions and things they can't even smell or have heard of the first thing every new doctor anesthesiologist nurse PA whatever asked me is am I a doctor. So I joke with them and tell them no I didn't stay at a holiday in last night though I just know how to do my research and pay attention. Unfortunately there's many doctors who do not like us Internet doctors but I'm sorry if I hadn't done this I'd already be dead. I'm not stupid I know how to do my own research and my retina surgeon and I sat together for hours discussing medical term analogy and diseases and what goes on in the medical community etc. etc. so now he makes may be his last patient which I enjoy because we sit there and I update him every quarter about what is going on with me now what my doctors are saying and what my thoughts are and he is always telling me to keep on fighting keep on doing proper research and get rid of the doctors that aren't doing me any good and that's exactly what I have done. However when they get nasty I will report them without hesitation and find a new doctor. I have one Doctor Who was sure I had lupus and the blood test proved it as well as other things and she refused to put it on my record because she didn't want it to be a pre-existing condition. After two rounds of that With her she was dumped as my rheumatologist and I went outside of our city to another city to see that rheumatologist and got answers in one day
I want to wish you luck on finding answers that you deserve
I developed linear morphea over my forehead when I was 13. It then extended and a my lower lip too developed a depression. At this stage, when i was 15, the progress if the disease and further scaring had stopped.
I'm 28 now, and there's a similar depression in that same line on my upper lip, which I believe is my morphea progressing.
But the problem is I keep developing oral ulcer over that depression. Is it all related?
i have this on my forehead and no one for years knew what it was I had to tell drs what it was.I need help
At 33:00 in this video you speak of a drug that was given to people to help stop osteoarthritis, are you talking about Pamidronate ?
Does this cause severe pain and is it caused by exposure to sunlight or no?
Mine is thick and white then turns brown purple. Ive been told its localized. It had been dormant for awhile and now its active again. It itches so bad.
Hi.i have morphea problem on my forehead since 1990. Now I m 42 lady.if you have any treatment for it plz help.
I was diagnosed on the year 2003, I had steroid cream I used on my affected area at my face. also I have it at my back had steroid injection..I am from the Philippine s.
I have morphed. I was diagnosed at age 7. I am 48 now and still have active Morphea , Raynauds and life long digestive issues. My scars disappear exceptbforbmorphea. Mine is in torso and grows longer and curves around under my arm moving onto my back. I have never been able to find doctors who address this.
In the United States, you can find rheumatologists who specialist in all forms of scleroderma by searching the Designated Scleroderma Research and Treatment Centers located on the Scleroderma Foundation website: www.scleroderma.org/centers
I'm really suffering from this diseas ..I'm from Morocco ..My forhead is getting distorted and deformed and i don't want it to get to my check and lips ...i visited 5 doctors here in Morocco they gave me creme ..but noo result ..and i'm.realy scared to touch my brain and get more deformed ...Help pleaaase really hands folded 😭😢😭😭 what to do ? is there any régime to strengthen the immunity if does it help ?? to stop this lesion from progressing ..please please
Hi Sara, we understand your fears. Please visit www.scleroderma.org to learn more about the type of scleroderma that you have.
Any progress since your last post?
Mine is on my waist area
First signs appeared 6 months ago
I have been applying some creams but no improvement.
Can u make subtitle bahasa (indonesia)....please.
PUEDES TRADUCIR PORF.
What medicine can we take to control the growth of linear scleroderma ?
Please check with your rheumatologist. Depending on the severity of the disease, the linear types of scleroderma are generally treated with corticosteroids and immunosuppressant medications. It is always best to consult your physician about which medication is best for you, because scleroderma can have varying progressions for each patient. If you fast forward to the 22:25 -25:30 minute mark of this video, Dr. York names a couple common medications such as Prednisone, methotrexate and mycophenolate. Please share this information with your rheumatologist to create and individualized treatment plan. You might have to consider surgery if there is disfigurement.
Debunking the connection with lime? I assume that it must be a coincidence that Lyme patients have this? I have the localized skin time I had Lyme and several people in my Lyme group also have it.. So much for debunking
Many diseases can overlap each other and symptoms that is why it is so important to run so many test and listen to the patient carefully about all of their symptoms small and large. The doctors only as good as the information you give them even if you don't think it's important and/ or they're only there to do the best they can and don't care about keeping up with current information on the Diseases they treat. You must be your own advocate and I can't stress that any harder
I want to know if a tattoo on morphea or on liner sclerodermia is a safe option or not
it is strongly recommended to avoid tattoos
@@SclerodermaUS my sclerodermia is the same since i was 8 years old. What is it the difference between linear sclerodermi and morphea?
@@backtoblack8073 Morphea is a form of localized scleroderma characterized by waxy patches on the skin of varying sizes, shapes and color. The skin under the patches may thicken. The patches may enlarge or shrink, and often may disappear spontaneously. Morphea usually appears between the ages of 20 and 50, but is often seen in young children.
Linear scleroderma is a form of localized scleroderma which frequently starts as a streak or line of hardened, waxy skin on an arm or leg or on the forehead. Sometimes it forms a long crease on the head or neck, referred to as en coup de sabre because it resembles a saber or sword wound. Linear scleroderma tends to involve deeper layers of the skin as well as the surface layers, and sometimes affects the motion of the joints, which lie underneath. Linear scleroderma usually develops in childhood. In children, the growth of involved limbs may be affected.
Learn more at www.scleroderma.org
@@SclerodermaUS thank you so much. I will make a tattoo, it's wrong but I don't care. I hate it.
@@backtoblack8073 it is strongly advised to avoid tattoos. www.medicaljournals.se/acta/content/html/10.2340/00015555-0542
I have been diagnosed with Localized Scleroderma( Morphea) and Litchen . But, I don’t have the vagina or pubic area involvement. I also don’t have the thickness of the skin. I did have a biopsy early on in the disease. But, I was told they weren’t sure how to diagnose me.
I’m taking Hydroxychoroquine 2a day. For 3 years now. Also, I occasionally use topical cream called Betamethasone Dipropinate which doesn’t seem to be doing anything.
How can I stop the doctor from saying I have Litchen disease and focus on what I do have and do you treat both the same?
How is Localized Scleroderma Diagnosed? Doctors who are familiar with scleroderma, or who are experts at examining the skin, can arrive at the diagnosis without much difficulty after a careful examination. In some cases, further tests may be needed to confirm the diagnosis. These tests may include taking a small sample of the skin (a biopsy) and some blood samples. It’s important that the entire skin surface be examined, so that a complete record is made of what is present at first (baseline record). Photographic documentation is also valuable. scleroderma.org/resources-center/
Please find a list of scleroderma specialists here:
Designated Scleroderma Research & Treatment Centers:
scleroderma.org/find-a-treatment-center/
You may find these educational videos helpful:
Medications in Scleroderma- Jessica Farrell, PharmD.- 2019 National Education Conference
th-cam.com/video/vbhBuiHTzts/w-d-xo.html
Scleroderma Tests, Dr. Richard Silver, MD:
th-cam.com/video/hJsOSkxPhSo/w-d-xo.html
Management of the Skin in Scleroderma:
th-cam.com/video/kH1E3PBwQdQ/w-d-xo.html