Webinar: Diagnosis and Early Management of Scleroderma, with Dr. Francisco Boin (2015) 

I’m so glad that I went as soon as I got some symptoms I was very president and I got diagnosed just few months after my symptoms and started treatment 🙏🏻 I pray to God that helped me to find this early and hoping for a better outcome. Thank you for this information.

Thank you for the Excellent informations, Iam SSc. patient. God Bless us all.

Thanks for sharing! This helps me understand what is going on in my body, with my complex diseases!

im male, 39 y.o this year was diagnosed with scleroderma 3 years ago from confirmed ANA test ... i notice the trigger is 5 years ago, so 2 years before i got diagnosed, starting with Raynaud's syndrome on both hands, and followed with excess urinating (10 liter per day) and extreme fatique (I can't even raise my hand in bed) but gradually recover after 3 days bed rest ... since then i can still work, exercise, but often sick and frequently go to the doctor (prior to the triggered event, i almost never been hospitalized and very healthy) my sickness started with GERD, then heart arithmya, high blood pressure, shortness of breath, losing stamina ... 4 years ago i got tested ANA profile negative, but 3 years ago i got tested ANA positive scleroderma ... and last year i do the test with positive result again for scleroderma, also with biopsy confirmed scleroderma and vasculitis ... now im on oxygen concentrator everyday, and limited energy but i can take a bath, walk, drive short distance ... i took Prednisone to relieve autoimmune progress ...

How can you have an early diagnosis if most doctors you consulted to are either ignorant or dismissive of the symptoms.

Thank you. Excellent. I am a scleroderma patient.

Thank you for posting! Very encouraging and informative, especially loved the end of his speech!

Thank you so much,, you have really helped me to understand this disorder more better,,

Can the nails capillaries recover if you start early medication or they will stay forever ?

Well done thank you. I have the lung scleroderma just recognized and now I know what were the starter symptoms

Comment about plasmapheresis: First, Therapeutic plasma exchange (TPE) is the better term for this. In the US it is done using centrifugal cell separation where the plasma is separated from the red cells, white cells, and platelets, replaced by sterilized albumin recombined with the separated cells. I agree with Dr. Boin that antibody reduction is not very effective in SSc. However, there is a lot of research showing that patients with SSc have abnormal blood rheology with increased whole blood viscosity and clumping of the red blood cells. Research has been shown that TPE used in a protocol not focused on antibody reduction can normalize the blood and if used long-term, can keep the blood rheology close to normal. This is my area of research focus and it is my hypothesis that the abnormal red blood cell clumping (which is highly shear-resistant) may be leading to the microvascular damage that then leads to fibrosis and organ damage. Since this video was released, there are several publications that are out discussing the role of abnormal blood rheology in SSc, including correlations with the development of digital ulcers and pulmonary artery hypertension. Note that when this video was released in 2015, little research was available on this topic and Dr. Boin's comments are completely consistent with the state of knowledge at that time.

Scleroderma is not supposed to be hereditary although I do understand that autoimmune diseases tend to happen in the same family as the Scleroderma patient. However my ex husband has been suffering the devastation of Scleroderma for the last 10 years, his sister pasted away from the disease here last year and now my daughter is being diagnosed with it. Trying to find a current study to get my 36 year old daughter involved in. Any info would be appreciated.

I am getting better day by day

@8:23, you may be incorrect in assuming that Morphea (Limited Scleroderma) is only limited to the extremities. In some, Morphea can be clearly seen on the underside of female breasts, and below the breasts up to the navel area plus. Researchers keep insisting that Morphea and Scleroderma are not the same disease, even if the underlying mechanism may be similar in some ways. The critical need is to ascertain what stage the Morphea is at. Some researchers say that an MRI type assessment is best, while others recommend a biopsy. But isn't it also true that Scleroderma and Morphea can both exist side by side?

What about AP (antibiotic protocol therapy) why is it never discussed by medical experts?

It's an awful disease! 😢I hope a medication to stop the collagen can be found. 🙏🏽🕯️

Thank you for the detailed information of this disease.

Excellent. Thank you

I have Reynolds 12 years, because smoking. And livedo . But not have lupus, scleroderma. Antifosfolipid have.

I am newly diagnosed Scleroderma patient !

excellent presentation!

Thank you so much.

You see, I find a whole bunch of information of systematic Scleroderma. And just in general. There is 0 information on a person who's been abused for the first 14 years of their life. There is no information I can find for people like me. Who got it through being abused through belts and other forms. Where can I find that information

the daughter of my sister are suffering to go now God mercy please

What makes the body overproduce collagen?

My wife is a scleroderma patient. Is there any solution. :((((

Can I have this condition with a negative ANA test? My tissues have become quickly/progressively damaged (face including tongue/esophagus, as well as hands/fingers and cervical spine) to the point of needing various reconstructive surgeries within 3 years of symptom onset. ( haven't had all the surgeries yet since I was only recently referred as a last resort and am hesitant to correct anything surgically when the cause is still a mystery..). Some Drs will look me straight in the face and say they "don't see anything wrong at all".. there's a greater than 1cm indent of the entire left side of my face - ANY person with half their vision can see it from across the room yet the Drs only acknowledge blood tests apparently. My physical therapists have even sent messages to the Drs on my behalf saying "she's been our patient for over a year, we've measured her face every evaluation and have witnessed the progressive shrinking of the left side, please help her!" And it all falls on deaf ears. I have the "most renowned maxiofacial surgeon in the state" and their literal only concern is reconstructing my facial bones.. I NEED to know what is happening me, this is terrifying (not to mention excruciatingly painful..). My pinky fingers are so lumpy and curled they barely function at this point and all the rheumatologist had to say is "it's not THAT deformed. You're exaggerating everything"... I'm 30.. and they weren't deformed at all 5 years ago... Plus whenever I cry during my follow-up appointments (it's always "come back in 6 months if you're still having problems"... For almost 4 years now) they blame everything on anxiety lmao. The rheumatologist when I tried to show my MRI or CT scans said they refused to look saying "I can't possibly use that for anything" (even though the facial surgeon gave me the discs and told me to have them evaluated by a rheumatologist..). How can I stop the damage when it's already severe and my Drs are still twiddling their thumbs? They've no problem doing endless numbers of reconstructive surgeries but can't bother to look for a cause?? I've already had two failed minor surgeries to repair my jaw, the next is complete reconstruction.. I feel like all I am is some type of experiment gone wrong or my life is one long episode of the Twilight zone 🤦

I was just diagnosed with it

Hi any one say how to cure this disease what the precautions we follow to solve this

im scelorodrma patient what can i doo plz hlp me

Is there a treatment for it?

Thin skin conditions is hereditary. A not quite perfect liver and stomache is hereditary but not with each child as nature picks and selects. My mom, who died from sclerderma (complete organ collapse within a 3 month period) also had a great aunt that died and "her tongue hardened into stone" after an accident. My great-grandmother, switched at work, with a lookalike cousin, during WW1, because she was in too much pain and could no longer hold a pen and died from all organ collapse. I, too, have scleroderma. Sperm and egg may decide a lot on who is getting scleroderma. If the sperm is more male, then female, then, that baby may never develop scleroderma nor thin skin. My mom's case was strange, cause, until the fall, there was no evidence of scleroderma. A month before a friend phoned to ask my mom's age as she saw her running after a bus. One months later, she could not lift her legs, AT ALL, and could only move like she was on ski's and the pain was overwhelming. Pre death, the outside skin was very soft...the inside spleen had hardened into stone. My theory is this, that if your female line has scleroderma and you take after that side of the family...you may develop scleroderma...after an accident? I know...the accident thing...like? I was a stuntwoman and professional skater under Janet Lynn and other alias skating names.

Why do people lose weight in early stages?

I have a lot of calcification in my body, my breasts, neck, back and rotary cuffs in my shoulders and I have the lung scleroderma will this progress faster?

It's needed more research and more education because many doctors don't know it or don't suspect or don't know how to recognize it and diagnose it. It's sad.

I would like to see more study on the type of scleroderma that is plugging the pores. Is the calcium buildup due to the erosion of bones and not just milk intact? I have scleroderma of the bone and skin with 2 fingers falling off the knuckles. I did a 3 day oil bath for 72 hours, up to the neck and emerged only to use the toilet. It helped tremendously (can't over state it) with the morning or long trip restricted movement of leg muscles and the pain stopped. I use to roll over dozens of times in the nite due to the pain but it went away. Another benefit, is that I formed pus sacks on my backside the size of quarters. I can imagine that it was sugar. The oil seemed to block the pores which may have caused gases to build up and send the sugar out. Can you check this out as a way to bring down diabetes? Purines is high in scleroderma pointing towards kidney breakdown, but, what if the stomache is producing too much acid to break down the foods? Would eating only soft cooked food help to bring down the purines in addition to not eating beef, pork and bacon. Psoriasis may also be a blockage of the pores but it also culd be confused with egg intolerance...have you ever done a biopsy of the skin to see if salmonella is involved and diabetes. Alcohol increases the pain, which again, with the acids from the stomache maybe too overwelming. Thank you for sharing

I have ssc.plz advise

My mother developed the conditions when she noticed a "scar" patch on her chest. Twenty years later, do I have a measurable "chance" of developing the same disease. My mother and I have identical birthmarks, although she had black hair, and I am redheaded and very pale....she was diagnosed twenty years ago, and I have shown no signs of it. What are my chances?

Iam from india , I have morphea, pls advise

I don't have the whiteness on the fingers but for the last several years I don't eat hard vegetables and rarely beef. I will have an immediate reaction to beef and alcohol. I try to keep my acids in control. I do finger exercises to keep the flow going in my hands and not a buildup. BUT, is the finger problem more with diabetics then non-diabetics. I am just over the inside of diabetics with dementia (70 years) with calcium buildup in the brain and a swollen pituatary gland and last year had a said cancer operation of the throat where they sliced off a jellylike product possibly from a closed gland or brain. I think diabetes contributes to the finger problems as gangrene is always associated with diabetes and poor circulation. I drank a lot of liquids pre operation and it went over 170 and drank enough liquids to keep my body alive and the BP came down to normal 3 months later. Too much blood and it will come out in the pores on the body....producing red blotches.

Acid can erode the bones, whether it is from diet with alcohol or from the stomache and liver. Yet, my mother died from scleroderma. She had a fall and died 3 months later at 78. Up to then, she went to a physician seriously twice, once for an antibiotic and then just occassionally. After the fall, her BP went up and down. When they did the autopsy her spleen was hard as a rock and white. Like, was the spleen damaged before the fall or after the fall within 3 months harded and was white. White would indicate no blood to my way of thinking. The spleen has it's own pumping station and oxygen...maybe we have played down the spleen. Is it possible that the spleen keeps people alive after drowning for a few hours by keeping the blood moving? Did the spleen's ?neck? snap during the fall and never started up again? Spleen not working and stomache turning out too much acid? I can't see where the physicians could do anything better. Something in the body...just stopped and everything winded down.

hello, this is an informative video on scleroderma. my wife was also suffering from this condition. she visited many hospitals but didnt get any relief. then one day she visited planet ayurveda and got sclero care pack. now she is fine. thanks to planet ayurveda.