7 facts about Scleroderma - a Rheumatologist explains

[@nancyrudisill5404]

Hi everyone with scleroderma sending❤❤❤❤ to you all

[@someonesomewhere1228]

It's been 5 years since i've been diagnosed with scleroderma... Im trying my best to care my health since then... Im sharing my way of dealing with this, hoping others might find it useful... 1. Raise vitamin D, i use 10.000 iu daily, im able to raise my vitamin D level from 7 to 47 in a year 2. Make sure have enough probiotik and diverse microbiome, im using yoghurt and kimchi everyday 3. Fix leaky gut with bone broth, daily 4. Pay attention and avoid food that cause inflamation and or fibrosis... 5. Stay vigilant, keep blood pressure and oxygen level checked, have regular medical checkup twice a year 6. Pray to God 🙏 wishing you all a good health and a good life...

[@theresamurphy6554]

Thank u ❤️

[@HUKARESS]

I’m having a hard time coping with my situation. Thank you for these tips 💕

[@iseeyou1312]

It's strange it only went to 47 on 10,000 iu. I take 1000-2000 iu and went from 49 to 114.

[@someonesomewhere1228]

@@iseeyou1312 For better absorption of vitamin D, you must include vitamin K, magnesium, and zinc in your diet... and also my pancreas was damaged (pancreatitis) possibly because scleroderma, thus i can hardly increase my vitamin D level, different people have different respond on absobtion, better do regular check if using vitamin D supplement ...

[@erocko1551]

Thank you I was diagnosed with Scleroderma when I was around 16, I’m turning 23 in about 6 days. It has worsen a lot.

[@muektheerathorn6776]

Thank you for such a great information and Thanks God that my wife who having scleroderma can still survive for almost 10 years without any medications.

[@MiasDolphins]

YES Praise God!!! How does your wife do it, diet?

[@SassyO100]

🙏🏽that’s amazing - I’m hoping I can be drug free for as long as possible.

[@dks2666]

Is it true 🥺... Please reply

[@dujuanyal]

Thank you for sharing this information. I’ve recently been diagnosed with scleroderma so this helps me.

[@marybethfredrickson2301]

Dr.Ortiz!! I can’t believe I found you on KZbin!! So great to see your smiling face again!! You are the best Dr I have ever had the pleasure of having!! Sending Blessings your way!

[@lilystonne4108]

I knew someone who died of the disease 20 years ago. She was only in her 50’s. You give people hope with your optimistic outlook but I was told that it is a rare and progressive disease. When it reaches the vital organs the outlook is not good. I sincerely hope there has been advances in the treatment of this devastating condition and that your encouragement is realistic.

[@mjblue84]

I also know and had a friend that died from this disease in her early 50's. Are scientists really researching for cures? Makes me wonder!

[@dbednarova]

Do you ever wonder how research is made? Geee…. It certainly is not that mad scientist gets suddenly idea and within few weeks he/she knows answers!!! 🤦🏻‍♀️ It takes years and years and tons of research to make one step ahead!😡

[@duncanneal5278]

I was just diagnosed with scleroderma and it seems right now it’s only in my lungs I don’t have any skin symptoms. I have amazing doctors and they found it early. I’ll be starting Cellcept soon.

[@indolilyindomitablelily7306]

I'm a medical student and I like how straight forward this doctor is. System sclerosis is a rare disorder and it really needs a team of doctors to work on.

[@cheriepattersoncheriepatte7009]

Lost my younger Brother -53 years old- last year . I miss terribly

[@bevcoyne6632]

Hugs and prayers ✨✨

[@LisaFullilove]

Thank you so much for this information on rare diagnosis, I’m from Dallas Texas. My sister just got diagnosed and I have all the symptoms also for the last several years, loss a sister less than two years ago with interstitial lung disease from RA, I will be seeing a dermatologist for a biopsy in a few days and a rheumatologist soon.

[@karidickerson6086]

I am so glad I stumbled across this while looking for videos on Sjogren's syndrome (I watched your Sjogren's video first and it was also really well done). I was diagnosed with limited or sine scleroderma last summer and have done a ton of research yet I still learned something from your video. The information about inflammation's role in Scleroderma and how it seems to kind of burn out early was really new information and very fascinating. Thank you so much, your videos are just so informative and approachable. I hope other rheumatologists are learning from you!

[@CelticGypsyQueen]

I wish you had an office in Corpus Christi! I've recently moved there from Colorado and I really miss my Rheumatologist I had there 😔. I love the way you take time to explain everything.

[@nelliebenavides9213]

Im a new pt diagnosed with scleroderma never heard of it till me now learning more

[@keelybaby17]

This video was very helpful! What state do you live in, you seem wonderful I would love to visit with you! But I’m in NC. You are so honest and genuine a true gem. We need more doctors like you in this world. ❤️

[@oneseeker2]

She is on You Tube, we have Duke, Chapel Hill and others in NC.

[@cherielilly2582]

I have lung disease ipf😢😢😢

[@carissaharding1987]

Thank you for your knowledge. I was recently diagnosed with Scleroderma after only 1.5 years of searching for help. I hear of people trying to find a diagnosis for much longer. Anyway, I just visited the Mayo Clinic's Rheumatology department this week to get a better idea of where I stand & to see if my overlap diagnosis was also what they were gaining from the visit with me. I still have a lot of unknowns but feel that with my local doctor & mayo, that I am in good hands. I myself also need to be gaining knowledge about this disease so that I can fully understand it all. Thank you for teaching me more!!

[@mjblue84]

I also have an autoimmune disease. DIET is extremely important and please stay away from inflammatory foods. Doctors rarely discuss nutrition. Research what foods are inflammatory for people who have autoimmune diseases.

[@TammyBrunet-k8b]

What if my blood work says yes and the doctor says my blood work was lying. I just got all new doctors and I am about to start seeing a Rheumatologist after 10 years of being diagnosed with Scleroderma. I am 44 years old and live in the south.

[@naomiaran2016]

A very informative video which I happened to stumble upon. I am 74 and was only diagnosed now. I am from Israel. I learned a lot about what to ask the doctor on my next visit. Thank you

[@designorbitart]

Thank you. This is a big help. I appreciate your presentation, you didn’t scare me.

[@gilca7139]

Thank you so much Dr. Ortíz!🌹👍❤️

[@nahidashaik5078]

My mother was diagnosed with scleroderma with pulmonary arterial hypertension

[@kdani11307982]

Most of the money spent on research is for medication’s to treat symptoms and not so much about prevention or progression. That in itself is really sad.

[@Mansmatters]

Excellent video. Very detailed and informative

[@glorymoran5261]

Hello , very informative , thank you Where do you see patients? What’s your take on hydrocloraquin?

[@tabathaakers1985]

I have polycystic ovary syndrome and here lately from time to time my fingertips will get cold, and go numb and take forever to warm up! Then today my pinky on my right hand I noticed was red when it warmed up! My legs, feet and hands have been swelling really badly! I have never noticed my fingertips to turn any other color besides red! I’m 37! and have been wondering why my feet, legs and sometimes hands swell out of control! From the symptoms I read I have a lot of them! I have also been diagnosed with peripheral neuropathy! I have depression and anxiety also! From time to time I will notice my heart skipping beats! I have severe constipation, I rarely use the bathroom! Growing up I had IBS with diarrhea! My fingers right now are tingling! I’m gonna ask my dr about this when I go back to the dr in a couple weeks!

[@maryellenhagy4526]

Still looking for a doc. My last one said scleroderma does not affect the skin on your chest. Ugh. Fired him.

[@SylviaCayouette]

I am Limited Scleroderma patient. I have a lot of body pain and I would like to find a good doctor in the Vero Beach Florida area. Thank you

[@mikeleighlitner605]

thank you for simplifying this for me. I was just diagnosed and it is very scary. Are there certain foods I should eat or not eat? what is the best source for tips and advice?

[@laurenlindsey6457]

I had the same question. I did some research online about it but the info conflicted from site to site

[@dranitacaprice]

Thank You so much, Dr. Ortiz! I'm so glad I found Your lecture!

[@dominiquechristenson1682]

I’m 42 years old and newly diagnosed with systemic sclerosis. Awaiting lab panel for further evaluation. What is the longevity of life for most patients? My aunt died r/t her scleroderma/sclerosis in her late 50’s/early 60’s. I completely understand everyone is different. Just trying to get an idea of timeframe. Thank you

[@PaganPunk]

I lost my dad when he was 42 to this!!! X

[@dorothydonahue4604]

a dear friend was diagnosed with extreme rapid progression scleroderma when she was 42 like you and told she had about 2 years to live unless something could be done to slow down or halt the progression. she was 65 when she died, more from dr errors than the disease. she was put in an experimental drug program at the university of piisburg medical center using what is now called prograf an anti rejection drug used for transplant recipients. the drug turned her condition around allowing her a productive and happy 23 years I believe she could have lived a much longer live if drs hadn't made horrific medical errors

[@raymondrobbins9495]

I understand what you are saying about dr google. I am the person you are talking about i do all the research first. I have changed a little bit i do not look up stuff until i have been diagnosed, I got a digital ulcer and all my searches said scleroderma and i was like but i have raynaulds and after seeing my RA Dr he told me i have Scleroderma with Raynaulds and RA. I am a male and there is a genetic property with RA so i thank my Aunt who had RA for giving me her genes since my mother had none of these problems.

[@yajairabastardo]

Your aunt could not possible give you her RA genes. We do not get genes from aunts and uncles. Your aunt and you got your RA genes from a common ancestor, maybe a grand mother, grand father or so. Do not blame her.

[@raymondrobbins9495]

@@yajairabastardo thanks for clarifying i am not mad about it, it was always just a running joke that i take after my aunt but that makes sense that i would have RA from my grandparent/parents and me and my aunt get RA

[@sdinardi1970]

I was diagnosed with scleroderma yesterday

[@sarahwagner2739]

Thanks for this info. I was diagnosed w diffuse systemic in Nov 2021. I had a great doc at Mayo but the left w no referral for me. She’s been gone a year. They put me with a relatively new doctor who is ok, but not communicative and empathetic like the first one. How in the world do I find a doctor who is kind and responsive? It’s not in the Scleroderma Foundation’s list of Scleroderma centers. They’re all great hospitals but I’m so afraid and alone I know I need someone with good bedside manner.

[@netty062]

I'm being referred to a Rh. doc for my condition, which is Raynaud's. But my doc is saying it's Chilblains because it is solely in my feet. I explained to her that Raynaud's is a constriction of the blood vessels (which I clearly have from the photos I took and showed her) and Chilblains is inflammation of the blood vessels and is more red-like and blistery. But she insisted twice that mine is Chilblains because it's not in my hands...have you experienced Raynaud's only in your feet?

[@lynnethompson5102]

I have Raynaud's in both my hands and feet, and have experienced chillblains twice (two consecutive winters). My hands/feet turn white with Raynaud's. The chillblains caused my toes to burn and turn red/purple. I also developed blisters that took a long time to heal. I think both conditions are due to poor circulation but manifest differently (internal vs external)

[@informedbeauty]

Hi there! Could you do a video on negative ANA, but positive ENA labwork?

[@ConnectedRheumatology]

Great suggestion!

[@informedbeauty]

@@ConnectedRheumatology thanks! I'm currently going through a bunch of medical investigations. My rheumatologist is treating my positive ENA (for RNP-A auto antibodies) in the context of negative ANA as a flase positive for the time being. He did mention our lab isn't the best for this panel, so I might repeat the same bloodwork in another city

[@donnaocchuizzo8578]

Do you do zoom visits? Love your smile and positive energy.

[@ushmaprem8624]

very helpful thank you !

[@eon2222]

Would serrepeptase be a good enzyme to suggest???

[@MissSaraKling]

Thank you for posting this ❤️

[@jameskeadle5975]

My Rheumatologist just said I have Scleroderma and sending me to Vanderbilt Medical for a full study. I do have one thing that nobody understands why it happens and just calls it Raynaud's. I do get all the changing colors of the fingers along with swelling but when I place my hands above my head the swelling goes all the way down after about 5 mins and my hands look normal with no redness or swelling. Already been to various doctors and conducted all tests "Vascular, Heart, Lung, Rheumatology, Gastro". What is your opinion on my issue?

[@avabrooks5267]

Great information!!!

[@florinajeneke7334]

Very informative video thanx im from South Africa 🇿🇦

[@cherielilly2582]

I have scleroderma lupus and rhe rheumatoid arthritis

[@marcusstevens1931]

Dr. Ortiz, what are your thoughts on plasma exchange therapy for scleroderma? It's putting some patients into remission.

[@deanagallatin6974]

I would like to come see you! My first rheumatologist... She knew nothing about crest syndrome. She would leave the exam room for 10 minutes then return and do another part of the physical exam. (I am a RN and I don't think she was aware of it) total tip off she didn't know much about it. My second rheumatologist said.. "oh we can just treat you with the typical drugs and they will work." Obviously he didn't cause the drugs made me sick as a dog. Needless to say I went with no treatment rather than the make me sick treatments. I have to work to maintain insurance. Can't be a good nurse when you have to duck out of your patient room to puke. I am on SSRIs and nothing else at this point. No one in Jacksonville Florida knows enough about my diagnosis to treat me so I can live my life as healthy and happy as I can be. There is a scleroderma center in Westin Florida. So there is my plan...lol.

[@deanagallatin6974]

I didn't realize this sounded so awful and bitter until I read it after posting. It wasn't my intention. But you were a deep breath I was looking for. Thank you for sharing your knowledge and reinforcing there is the right treatment for me. Just further south ! Lol

[@robinmartinez4749]

Have you tried the Mayo clinic? That may be helpful.

[@sharonnorng6957]

You said you have a healthcare facility in California, I would like to know where the location please Thank you

[@suevandewalker4657]

I tested positive a year ago for scleroderma and had a pos ANA. Had those tests repeated this week at a different lab and both test came back NEGATIVE!?! I am so confused!! I have has Raynauds for about 5 years, I am cold most of the time and while at work my hands are freezing. I have everything heated that I can. I wear 3 shirts most days and sometimes put on a sweater! I have had extreme body itching for over a year now and take atarax bid. Just increased about 2 months ago from once a day. Perplexed!a

[@VickyGoss]

My friend tested ANA Positive and Centromere high ( lab range 0.0-0.9_ Result 5.9 Feeling crushing fatigue

[@graziflorida4377]

Hi Doc. I am Ana positive and scleroderma 70 test, positive ( 1.8 AI) mormal level is >1 . My liver enzymes are slightly high and glucose is 113 . Should i worry ? Thank you G.

[@jaypadilla6346]

You mentioned fibrosis if the hands and other extremities. What about hardening of the skin on the feet to the point of leather like chunks of skin falling off the foot?

[@charlesbrown11]

Very informative video. I know you mentioned that at this point in time there is not much to take on the drug front to ease diffuse scleroderma, however, what are your thoughts regarding stem cell therapy. Do you think it could be helpful? Thank you.

[@Sclerodemietje]

Stamceltransplantatie is de ultieme klap die je kunt uitdelen voor deze ziekte. Heb zelf diffuse sclerose en 6 maanden geleden een stamceltransplantatie ondergaan. Voor de behandeling had ik geen zin meer in het leven, zo zwaar. Heb weer hoop en een toekomst, zo voelt het nu althans. En over een paar weken ga ik weer me werk oppakken. Ben zo dankbaar. Er zitten risico's aan zo'n behandeling maar weegt niet op tegen de ellende van de ziekte.

[@syrus3k]

I'm off for my blood test today, hopefully it's just reynaud's

[@littlemutiny77]

My mother has scleroderma of her scalp only. She’s been trying to find a treatment to help the pain. From what I hear, this is rare. Anyone else have this?

[@wakeuppeople5987]

Is getting a bone narrow transplant good for your sclerderma .

[@bonniemoses7576]

I have burgers raynards and syndromes. The pain is unbearable. I live in TN. And no one will see me or even give me anything to help with the pain. Cleveland clinic diagnosed me along with university. Hospital. Please help. Tell me where to go or what to do

[@evandavidwilton]

I tested positive for mild scleroderma at Mayo Clinic several years ago and my ANA was really high. Does that diagnosis change?

[@kp5870]

I heard from my rheumatology doctor that sometimes that titer result with the positive ANA result can go up and down, but it doesn’t change the diagnosis, and my doctor’s response matched this doctor that is why they don’t redo these tests.

[@williefufu2985]

Thank you

[@Herprettyflowers]

Dear Doctor, I'm a scleroderma patient with ild and Raynauds. For the past 2 years I've been taking only MMF and pirfinex tablets. But lately I've started to feel very tired and not able to do much after taking these medicines. Are there any better medicines that you can suggest. Thank you

[@theresamurphy6554]

I use amlophine 2.5

[@jessnoonan470]

I have all the same dx you do..

[@kp5870]

Hi! Love your channel! I have had Raynaud’s for the past few years that my autoimmune has now evolved to limited scleroderma. Can you have a positive ANA for centrometre to suspect scleroderma, habitual regurgitating food, but NO skin issues?

[@nycatlady2314]

This is 2 months after your question was posted but you may be interested in my experience. I had lupus for years and suddenly developed gastroparesis. A couple of years and multiple tests later I finally tested positive for scleroderma. Then I started seeing skin thickening on my chest. I hope you are doing better. It’s like a roller coaster for me where some days or weeks are fine and then I’m fatigued and in pain for some time.

[@kp5870]

@@nycatlady2314 that’s very interesting. Since my post, I have been officially diagnosed with early stage scleroderma in my hands and toes. Limited version. I do have narrowing of esophagus because of my newly diagnosed Eosinophilic esophagitis. These are all a part of the same autoimmune family :(

[@nycatlady2314]

@@kp5870 yes, since the lupus diagnosis I’ve “collected” 4 more autoimmune diseases and several associated conditions. Treatments and awareness are better now but it’s still scary. I really wish you the best.

[@nildamolina4523]

Thank you

[@jodigunn1082]

I have sclerderma and also have seizures my doctors dont see the connections and wont work together i dont know who to see for a doctor in general may 21

[@advocateabhimanyusingh6988]

Thanks doc

[@aletmarais1749]

What diet do you have to gollow Follow

[@patricialopez4573]

Hi my name is Patricia Rodriguez Lopez. I was diagnosed with escleroderma. I don't know which kind. But I have a lot of pain in my elbows and hands. They also told me I have tendinitis and carpal tunnel. I'm suppose to have surgery soon. Is this a good idea? Please advise

[@marcusstevens1931]

How are you feeling now?

[@goodlookerone]

Is systemic sclerosis the same as sclerotic facet disease in your spine?

[@DianeSpira]

Can you get pregnant or have IVF if you've been diagnosed with MCTD overlapping lupus, scleroderma and dermatomyositis.

[@leslieisepic]

Could you post a video talking about the connection between celiac disease and Sjögren’s? I have both the genes for celiac disease which explains all of my symptoms the past two years before cutting gluten and dairy out of my diet a couple weeks before switching to a new gastro. I also tested positive for ss-b antibodies and have symptoms of SS. I started seeing a rheumatologist this year for my raynauds too.

[@ConnectedRheumatology]

Of course and thanks for the suggestion! I'll add it to my list. And good luck, it sounds like you've made some headway in getting to the bottom of your symptoms.

[@leslieisepic]

@@ConnectedRheumatology definitely. I started advocating more for myself and linking my symptoms earlier this year. I was first diagnosed with GERD/silent reflux in 2019 by an ENT when my symptoms started. Since eliminating gluten and dairy I have weened myself off of omeprazole and have had any GERD symptoms and the costochondrotis is finally calming down.

[@leslieisepic]

@@ConnectedRheumatology have not had any GERD symptoms

[@maggyrosario7816]

Thank you very much, very informative video. Up to what level it is possible that the ENAS profile indicate to be positive in Scl-70, in anti Sm, in anti SSA 52 kd and after months of taking medications, they are negative?

[@ConnectedRheumatology]

I'm not 100% sure I understand the question, but yes, in some individuals autoantibody results can become negative after taking medications. Sometimes it correlates with the condition improving, sometimes it doesn't. Hope this helps!

[@charlenejackson2372]

This video was very helpful! I live in Austin Texas and would love to know if there is anyone physician in my area that treater Scleraderma?

[@cecyriosvelascou.7846]

Hi Charlene, I'm in Austin, did you find a doctor that treats scleroderma? Thanks!

[@mcflurrymma]

First of all thank you for posting this video. I need help!! I have been trying to get an accurate diagnosis for several years and it is looking like I have systemic sclerosis. I have all the symptoms and more…I have seen a rheumatologist in Salinas, CA who said I have a rare type of connective tissue disease but would not give me a diagnosis, stating I needed to be evaluated by a panel of specialists…any suggestions on how to locate a qualified rheumatologist in my area? Or any suggestions in general?? I feel like a hamster on a wheel!!

[@rosemarybrinkman4479]

I know at times it is frustrating as He!! but keep on trucking and don't ever ever give up. As I can breath and reason at 76 yrs, of age I will never give up exploring the straining issues that arise with me. I would rather know as much about my issues than be in the dark. God bless and Keep you always! :)

[@SassyO100]

I hear you. It can be frustrating, and especially as SSc is still very rare. I’m in early days of diagnosis but know my internal presentation of fibrosis May be more extensive than my outer body. I researched which hospital had the best rheumatology department for autoimmune diseases in London and found 2 at top Of the list. One with a large team of Rheumatology consultants all specialising and continuously researching (multidisciplinary) automimmune conditions along with Sjorgrens and SSc. The other hospital department I found had a specialist unit for SSc which I may ask to be seen by later once I get a clear definitive diagnosis. My bloods air towards SSc but there may be other issues affecting me, so want a broader approach with having access to specialist in many autoimmune areas it’s helpful place to be. Good luck in your search for the best place for you.

[@alishahorn9996]

My grandma had it and there's now a chance I have it

[@cheriwolfe3332]

Morphea- I need to find a specialist...I can't find enough info or treatment and its spreading

[@Paarthurnaxdova]

Did you test positive for anti scleroderma-70 antibodies?

[@loveandpeace3679]

Can you please explain SSC (SINE) to me? I was diagnosed. I have it most severely in my GI tract and mildly in a couple other organs, but I don’t have the skin involvement at least visibly. I’m in a small town and my doctor said she’s only seen one case and that was in med school 35 years ago so she couldn’t even really explain it to me.

[@Paarthurnaxdova]

Can a positive anti-scleroderma-70 test of 4.4 be anything else besides scleroderma or lupus?? Anything else?

[@marcusstevens1931]

I have the same. Did you find an answer?

[@sylvia6695]

I have SCL70 positive, ANA+, cardiolipin IgM. I was diagnosed with lupus last year. I’ve never had elevated ESR or CRP. I had RCVS prior to autoimmune diagnosis. In the past I was diagnosed with fibromyalgia and chronic fatigue. My doctor has not pursued following up on SCL70 since it was weakly positive. Should I have this revisited? I have telangiectasia, hyperpigmentation/hypopigmentation on my legs, neck, and face. Is there such a thing as a weak positive SCL 70? Should other markers be pursued since there are others that can be assessed?

[@anjusindhav9489]

Work your liver and see videos on to heal leaky gut you will be perfect after a year

[@MissSaraKling]

Are there anti fibrotic meds now?

[@ConnectedRheumatology]

There are! Nintedanib and pirfenidone are anti-fibrotics that are being used for interstitial lung fibrosis. Patients with scleroderma can also have lung fibrosis, in which case, one of these medications may be used. There are currently studies going on looking at these (and other) meds in scleroderma patients, even without lung fibrosis.

[@MissSaraKling]

@@ConnectedRheumatology thanks so much. My only symptom has been 30 years of manageable Rheynauds. And new spots on my shin, arm and a pinhole red spot on my inner lip. Although this is scaring me because I think I’ll get the tightening now all over. My pattern of ANA came back centromere. Titre 1/640

[@ConnectedRheumatology]

Hang in there. You definitely deserve a sit down with your rheumatologist to talk about your Raynaud’s and new ANA result, but based on what you’ve shared so far, I don’t believe you need to think about anti-fibrotic medications right now. ❤️

[@Paarthurnaxdova]

@@MissSaraKling did you test positive for the anti scleroderma-70 antibody?

[@jennifersmith9913]

I was diagnosed at age 20 after a year of symptoms I’m 48 now I went to my pc physician bc I was having g a few symptoms of something and a rheumatologist just happened to be filling in he was young and brilliant he diagnosed me right there Gand became my rheumatologist for many years I’m having vascular issues for a year and half now and am depressed my teeth are messed up and need dentures but bc my mouth is so small I need collapsible dentures I can’t find anybody who makes them I called Temple university and university of penn dental schools nothing I live in south jersey it is depressing and I feel like I can’t move on I wear a mask everywhere bc I feel embarrassed idk what to do

[@bevcoyne6632]

Using a tanning bed helps. Seeing an aesthetician or cosmetic surgeon for a deep face peel so you can get movement back could be life-changing

[@joyceparkes2678]

My sister died from systemic Scleroderma.. dreadful disease 😔

[@Willene1950]

I'm so very sorry

[@eileenroque]

My sister was diagnosed with systemic scleroderma. I’m trying to educate myself on it but there isn’t much info that is more recent. Please reach out to me to help me understand this horrific disease. Thank you ❤

[@joyceparkes2678]

@@eileenroque Eileen I’m so sorry.. I cannot take responsibility for clarifying this disease. .. I educated myself from American medical reports. I had a mental health breakdown. Please look after yourself as you need to be as strong as possible in the time ahead 🤗

[@Riyasharma-nk6hk]

CAC Detox Premium Powder This herbal powder contains akik pishti, shwet parpati, tal sindoor, kamdudha rasa, etc that reduces pain, swelling, tightness, stiffness, & swelling of the skin in scleroderma patients.

[@jinaljoshi677]

How can we take?

[@jinaljoshi677]

Is it useful for tightning of skin & bent hand finger?

[@sherricorbin8902]

Are you seeing new patients? I live in Oklahoma’ and I am the 1st This patient w/all my dr ‘ including my rheumatoid dr. I am scared’ !! It is in my lungs. I believe I have had it for about 10 years ‘and not diagnosed till now. ‘

[@user-yw9ys3dz7x]

Lay off of "google" she said. Too late☹

[@danakidd9768]

Same..waiting on my first rheumatologist appointment after a positive ANA >=1:1280.

[@sallyannmuniz4051]

Had me researching all night info of my fibromyalgia, Raynaud syndrome, hand therapy, cold always and live in Florida 😆 God help those up north as I was native New Yorker, no wonder I always hated fall and winter, relocated 1998 FLORIDA. I AM VERY CONCERNED especially since it took me forever to text..almost becoming impossible, using microphone, this is deteriorating disease, still keeping focus on my faith now, Lord Jesus & Holy Spirit 🙏 God has me now ❤ in his hands.

[@sheenathewholesalequeen]

I see that you said you have treated all types of patients with Scleroderma, any further recommendations(such as websites or books), I see that you talked about the medications and the fact that the lupus and arthritis meds don't work, my mother was misdiagnosed for a long time as a result she now has to take Dialysis.... any meds that can help her with the daily pains of fingers, joints, she hurts often even if she accidentally hits them.

[@vickipedia3253]

A month ago and 2 months after starting Anti-TNF Humira, I am diagnosed with Scleroderma (Systemic Sclerosis). NEVER had anything like it before Humira. Scleroderma foundation has named anti-tnf as one of the culprits causing scleroderma. When I googled scleroderma first I messaged my BFF that I feel like committing suicide.

[@rosemarybrinkman4479]

You know what? Whatever my situation whether health or finances or even trying to get good nutrition customized to my body I keep going. For if I don't become proactive in my situation then I can only blame myself for the misery I may feel. I am an older person who in the last ten years of living have found my Savior. I talk everything over with Him and He does send his peace that surpasses human understanding. His tender mercies are forever. He gives me His strength when I am weak. Each day brings a multitude of challenges and I recall years ago when I did not have all these health issues. My common sense helps a lot too. I am currently looking for a good Dr. keep learning and doing research. God Bless and keep you!! :)

[@DeJaVuCa]

We cant lay off google in USA because medical help is Soo inadequate & too many people needing help! 101 test of what it's not before we die of what it was- - possibly

[@saktheeswari6348]

Mam I am affected by scleroderma pls help in my life mam i don't know english so some speech cannot understand mam I am cannot sit in down place only sit in chair pls help sitting exercises pls reply I am living in Tamilnadu🙏🙏

[@neelamsingh5628]

Follow new diet system by bv chouhan first listen to the lectures on youtube

[@Connie-z6k]

But MS Dr it is never simple 🤨🥺🥺

[@jessicaramos2804]

❤❤❤

[@monikadossa8607]

Can you be my doctor?😢

[@andrearossi7063]

♥♥♥

[@gifgit8613]

💔💔💔

[@PaganPunk]

Or Systemic Sclerosis!! I lost my Wonderful Dad To This Horrendous disease...He was Just 42 When He died....And that was 30 years ago!! ..... I started showing Autoimmune Problems and I begged for it NOT To be This.....I instead Have chronic ITP, Lupus, Sjorgens, Hypothyroidism, Reynaurds And Keratoconus (The later is not Autoimmune but my Lupus had Totally Wrecked the 3 cornea Transplants I've had....so I am now Certified Blind)..... I am sure all this is Gene Based due to My dad's family having Rheumatoid problems And This Horrendous Disease

[@sheilawhitener3819]

Same here ..my Dad at 59. Back in 1971 they didn't know anything!

[@PaganPunk]

@@sheilawhitener3819 Hugs ❤️ xxx

[@csmith5611]

I don't feel the happy carefree photo of doctor is really appropriate or empathic in this situation where suffering people are researching a devastating disease.

[@kdani11307982]

Yeah, I’ve been through 3 1/2 years worth of symptoms and one strange thing after another happening kind of like being on a roller coaster and so I find her little giggles offensive. After 3.5 years I may or may not have mixed connective tissue disease because to rheumatologist said no you’re all right and one told me to just be happy and have a good life.

[@Noctessa]

As a regular dr approach I can understand your reaction but on the other hand she's breaching a platform that ONLY bright cherry happy people get the views. I was drawn to her because I have Mixed Connective Tissue Disease which is very misunderstood. I work in a call center for a credit card company and I have to put on a character voice to instruct, inform and provide service for often quite confused customers. This woman is providing immensely confusing and overwhelming information with a KZbin character personality. New ways for us to be more informed in our own care is so important (my first husband died from medical malpractice so I never hang on my Dr's words... I research everything!) I hope there's much more Dr's being this exact delivery... straightforward, informative and if her demeanor gets her more views/subscribers than more power to her. As a disease sufferer myself I understand fear, multiple pain sources, unsure of our future and powerless to a process that causes so much chaos in our lives I understand your feelings about her presentation. Hugs for healing 🤗

[@asianguy6174]

It’s called hope and optimism.

[@asianguy6174]

Your words carry consequences even when anonymous, for you and your target. Going through a hard time is no justification.

[@MiasDolphins]

I want her 2 b my dr please

[@sallyannmuniz4051]

I was such an active Pre k 17yrs , I love my job, I have been off on medical 1 month now and diagnosed with Fibromyalgia, Raynaud, Osteoathritis, "lupus", still undiagnosed awaiting blood test and visit with my New R.A Dr. I feel as if I m going nuts, I am cold which leads to body shivers, swelling of ankles and inflammations, trying to figure out medical leave but I feel as I can t function with all the meds, mood anxiety, feel heart swell... I must have had some kind of feeling swelling in frontel because after a brief flare it took me a week and a half to recover from my head, all this came at once and seemed over night, now I am understanding past mild unknown but happening in my body, I found an old empty bottle of 500 MG Gappatine date 2004, now 2022 hmm. Seems I have sclerdermia and my whole hand especially 3hard fingers that Don t seem to go away and fighting not to become depress but I feel helpless and fatigued, MISSING my students 😢 😔 my job, so I am in the hands of My Lord and Savior, Jesus. Lord Jesus Help us A, BLESS this 🙏 🙌 fabulous Dr. ORTIZ, PLEASE KEEP this wonderful blessed Practice, Dr. ORTIZ HELP MY ANXIETY, I am ready for my next R.A appt. In a few weeks, I am getting blood results from a 2nd Opinion & keeper R.A Dr. Disability seems the way, fatigued by Wed, pushed myself so bad that by mid day I felt as if I could faint, this was what got my Horrible joint pains especially on my rt glute. 😢 so difficult to brush hair, dress already tired. God 🙌 bless

[@maurielewis2785]

Nothing she says works