rollie4 welcome to the medical world. I’m a retired nurse of 40 years. Yes I will brag.....I was freaking great at my job. Advise? I would say the number one is listen to the patient. They know what’s going on with them, please don’t rush. I’m now a patient and so many times I feel like a number, diagnosis in computer. Compassion is so important. Good luck to your new career. 👍👏
I'm a Thai. I was a former nurse. I 've been living with Scleroderma for almost 10 years. I have a good health at present. Follow me and Learn from my own experience in "Toi Story" RU-vid Channel.
On April 3, 2004 my 24 year sister lost her battle to this disease. I just saw this video and it brought tears to my eyes because l saw my sister all over again battling for her life. Please never give up. I pray everyday that a cure because available and never has to affect another person and family again. God Bless.
sarah vela Although Scleroderma is rare my favorite radio station told a bunch of students who were 12 years old to curse me with the disease along with Ulcerative Collitis, Cronh's Disease, Type 1 Diabetes and Adult Onset Stills Disease. 😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱😱 You want to know what happened my brother when he was 5 decided to say disabled people are not allowed in church ever. There is a very very high chance I could go deaf because it runs in my mom's family. I was also born with a eye disease called Retinopathy Of Prematurity and sadly I have been a T1D my entire life and I was never given anything. Do not ever play a game called changing the game it ruins life's. When I reach age 28 or age 30 I will have to go back to the third grade. There was a company in Springfield Missouri called silvan learning center. It was ran by Jehovah's Witnesses. They spend everyday of their lives writing fake laws like A&A positive means females will turn into males and males will turn into females.
why am i watching this before bed.. now im shitscared, pretty much crying and thinking about getting the courage to end myself... i dont want to lose my hands, and get sicker. of all the things to get...
My best friend passed away yesterday from this. She was diagnosed 1 year ago. There needs to be more awareness about this illness! It is heartbreaking. 😭
My niece was just diagnosed with scleroderma (systemic sclerosis). It has already attacked her lungs and heart. She has stage 4 pulmonary hypertension and severe heart failure. She is 37 y/o. Her drs have started her on Treprostinil via IV and she will be on this the rest of her life. I am terrified that her body wont last much longer.
I was diagnosed with scleroderma (crest) a couple years ago. Eight months ago I became vegan (what I ate) and the skin on my arms is more pliable now. Before I could not pinch any skin, now my skin actually moves.
Hey hope this isn’t too late but I learned that the vegan diet is high in lectins. It made me limp my hip hurt (at 24!) My mom having this taught me to be fragrance free and limit lectins (it’s all grains and legumes so it’s hard. That means no beer! No one is saying that either. And limit using cleaner. Even the natural ones make me cough. And gluten in the oven makes me pass out….
I was diagnosed with Progressive Systemic Scleroderma. I had a Stem Cell Transplant that stopped the progression of the disease, 2/22/2011. Dr. Richard K. Burt at Northwestern in Chicago, IL saved my life. He is my Hero. I am now 74 years young now. I have learned to cope with this disease even though it has totally changed my looks and my life. I stay positive and deal with it the best I can.
My wife was diagnosed 7 years ago with systemic scleroderma and Raynauds. She has more of the digestive problems. We just recently started seeing a Functional Medicine Doctor. It is doing wonders. Please look into it if you have this disease. A HUGE help is the Reishi Mushroom and the spores of it. Please researsh that and you will see. She was originally on like 7 meds. She is down to only one and is weaning herself off of that. She should be completely off of it a week or two. I have personally done ALOT of research these past 7 years or so and believe me when I tell you that you need to take control of your health and make changes where needed. Don't just rely on your Medical Doctors because they just want to mask and treat the symptoms and not tackle the cause. It is your job to tackle the cause with everything you have. God Speed !
im a medical student and i have an exam in a couple of days on internal medicine andseeing people actually suffering like this made me so emotional,, i wish there was a cure
Fruit and veggies diet only. Doing a detox with herbs and using mushroom powder. No sugar or processed foods or salt. I believe God has cure for everything.
One of my former classmates died of Scleroderma at age 49. I've had Primary Raynaud's since I was a child, and so I can relate to some of the problems Scleroderma patients have to deal with, but it's still hard to imagine the extent of agony they endure.
There are so many types of scleroderma. I myself have undergone a few surgeries to rectify the physical symptoms with some success. I'm happy that my condition went into remission about 8 years after being diagnosed. I wish the best for anyone currently suffering from this condition!
David Thompson my health us good for the most part. I was diagnosed with it when I was 7 years old, I am now 25 and it has been remission for the last 7. Luckily things went well for me. Treatment wasn't working for me personally so my family sought out alternative medicine. Herbal remedies to alleviate pain and keep healthy cells reproducing. It's not a perfect science but everyone must do what they can. I think a healthy outlook is the most important!
haziepie hey Thank you for your response! I've that omega 3 fish oil with no Mercury is really good for scleroderma. I told my friend and she is going to start taking it. Her Dr also had her do a few sessions of chemo a year ago because she had scarring on her kidneys and she has been doing fine with that and in a few months she is going to do that again. But thank you for sharing with me and I hope and wish nothing but the best for you :-)
+nikki latimer Nikki, my name is Yani and my brother, 47, was just diagnosed with localized scleroderma. Please, tell me about the stem cell. How did it help you?
+Yani Huften I HAVE SYSTEMIC SCLERODERMA SO MY SKIN, LUNGS, STOMACH & ESOPHAGUS ARE INVOLVED ALONG WITH REYNAUD'S PHENOMENA... DR BURT DOES THE STEM CELL TRANSPLANTS & U MUST BE ACCEPTED & IT'S USUALLY AFTER ALL OTHER TREATMENTS FAIL, WHICH WAS WHAT HAPPENED TO ME. I WAS BEING SEEN IN NORTHWESTERN'S SCLERODERMA CLINIC & MY HEALTH WAS DECLINING & I WAS GETTING BAD SO THEY ASKED DR BURT TO SEE ME & THEY DID...IT'S ALOT OF TESTS HEART, LUNGS, CT SCANS, BLOODWORK ALOT OF BLOODWORK & THEY REMOVE UR STEM CELLS OR THE STEM CELLS OF A DONOR, I USED MY OWN & THEN U HAVE CHEMO TO KILL UR IMMUNE SYSTEM & THEN THEY RE~INTRODUCE THE STEM CELLS BACK INTO UR SYSTEM...WELL I STARTED GETTING BETTER, THAT WAS 6 YRS AGO DO GLAD I WAS ABLE TO DO IT
Nikki Latimer I was wondering how you are currently doing? My sister has scleroderma as well and her health is declining as well. The same organs have been affected as the ones you mentioned.
I recently met the love of my life and he was diagnosed 3 years ago.. I love you Darryl. Thank you so much for the video and the information. May God Bless all.
My sister Bethany has scleroderma but it was only on the skin .she used to have trouble opening salsa cans doing push ups but though all of it she stayed happy she never complained we kept praying for her and in about three years it started going away I can't even tell she had it. She's the best and I love her and I hate that she had to go though that
I was diagnosed with this 12/26/2017. It is progressing and this is a difficult disease to deal with as we never know what the changes or challenges will be from day to day. This June I rec'vd the dx of multiple myleoma as well. I have made the choice to not treat it as there is no cure for the SSc. I am making the most of the days in whatever way I can....
I was diagnosed with this last year so I am glad that I can send this to people so that they can get a better understanding of what I am going through during this.
Are you fragrance free and reducing lectins intake? I’m getting this but am also an anatomy nerd so that’s what research is saying! But medical school is still ignoring. My moms allergy trial and error the last 20 years is supporting these theories. Literally if I smell cleaner my back hurts locks up. If I smell gluten in the oven I pass out… Cheerios is what triggered my hand to deform. Grains are not safe. (Same with beer sorry if you like it!) If you need any ideas to reduce symptoms! It’s all about healthy fascia from cbd, or thc. If you want to trust a desperate person who also took grad level physiology. I’m not a doctor but they dont really understand how you feel. I’m going insane because reducing symptoms is so simple, but affording to live in isolation is difficult. I would be so happy if I got enough disability money to stay home all day. People and their perfume make me physically sick. I refuse to subject myself to pain while having to hide it because no one believes fragrances can be painful. Now I’m commenting like crazy to try and spread the knowledge. Basically never buy P&G products. Major corporations are to blame www.ourstolenfuture.com
Diagnosed when i wad 14 now 31. I am in pain and can still move my hands etc. My bowels do not move etc and i find it very hard because i look pretty normal on the outside you can see spots. Nobody understands in my family. My boyfriend is a huge one
I would recommend that you create a account on Inspire.com and post your questions to others with these conditions. There are so many great people that are happy to help you - and you can likely give some insights of your own as well!
I've been diagnosed with this three days before Christmas and thanks so much for sharing because I'm really having mixed feelings, I'm a mother and wife and I'm striving to be with muy family for a long time but it does make you rethink and consider things differently. I'm praying for more funding for further research because after all we're people to and we deserve answers
My husband of 30 years has been suffering with something like this since April, his hands are in constant agony, and both are basically claw shape, he can’t open or close either hands, it’s now affecting his foot, he had to quit work because he can’t use his hands for anything, and now that I found this, I’m absolutely terrified. If it is indeed what you are saying, my husband has already said he wants to end his life, he’s never said anything like that in the 30 years we’ve been together, and it’s tearing us both apart, but I need to know how is it diagnosed? He’s already seen three different rheumatologists, and none of them can find the cause of his problems, so I’m going to tell his doctor about this and see what happens, I just pray to God that it’s not, because I myself have been in and out of hospital for the last 30 years because of Crohn’s disease and cancer, and I had to retire and go on permanent disability five years ago because I’m left with only 5% of my bowel after 37 operations, my husband‘s been my rock, now he’s in this same situation as me, I don’t know what they were going to do
Cheeky Devil my rheumatologist kept checking me by lab work. I was seeing her every 2 weeks, I was in physical agony. I had IV treatment of methotrexate every six months for a year, got some relief, they never could find a vein, I’m a difficult draw even when I was ok. I’m now on oral medication, holding my own. Sometimes you need to stick with a doctor to let them work out a plan. It takes time. I’ve had this for 2 years now. Always keep symptoms and questions written down to take to the doctor. They appreciate the patient Input. I wish the best for you both.
Aloha Md thank you so much! He is now been on prednisone for several weeks, and it is helping him manage the symptoms, allowing him to move his fingers a little bit more, the prednisone is such a nasty drug to be on, I know because I was on it for three years, at 85 mg a day, but in my case it was to treat my Crohn’s disease, because I couldn’t eat anything, but by the time I figured out the side effects it was already too late. Because of the prednisone I developed osteoporosis, osteoarthritis, degenerative disc disease, a very bizarre heart arrhythmia, and brittle bone disease. It seems the treatments are worse than the actual disease, but thank you so much for your response, it gives us both hope to hear that you’re managing so well, we both wish you the very best as well, and thanks again!
Hopefully they find a cure soon ! I watched the movie earlier for. Hope. These people that have this go through terrible changes to their whole body. Sending my prayers and praying for all who are afflicted. God bless you all and hope there is a cure soon !
debbie allen ...hopefully you have a rheumatologist who will assist you with managing your symptoms and your pain. The biggest thing to remember is sclero can involve your entire body and your doc will not know what you are going thru or your symptoms unless you tell them. If you are in the USA it also is highly advisable to talk to your doc about disability as it can take your hands usage away. Be your own advocate. Keep a journal and a list of symptoms to talk to your doc about...take care of you, you are sadly not alone in this long, painful, joy stealing, faith testing, life altering, ever changing, incurable, struggle to live independently group...
Well I did my text in October of 2018 didn't get my result until today and they told me I was positive for scleroderma and watching these video scaring me more I am in a lot of pain that's why I had all these test done 😢😢
My mom was diagnosed with this disease in 2015 and she passed in 2019 due to complications where the scleroderma reached her heart and she suffered from sudden cardiac arrest.
I met Jo Bonner in 2010 (the governor of Alabama) to pass a bill on more research for Scleroderma. I'm not sure exactly what was done, I was so young (10 years old) but I'm now seeing way more about it and it really comforts me to know that I'm not alone, for so many years I battled with myself and this video made me cry so hard but more than anything just happy tears and comfort knowing I'm not alone. I was diagnosed when I was 8-9 but actually had it years before. No doctor knew what it was. Thank Jesus my Scleroderma is arrested therefore hasn't attacked any further. I have it on my whole right ankle, right foot and toes, right leg up to my knee, also on the arch of my left foot and on my big toe, I have a large strip of it vertically on the left side of my stomach and also (TMI) but the left lip of my woman part and inner thigh. It has distorted every part that is is on and everything is significantly smaller and tighter on these certain areas. My main struggle is how my right leg and foot/ankle is now deformed it's embarrassing and it's an emotional journey and it's so hard to explain it when people ask me, they think I was born deformed or my leg is fake for some reason or another. I have learned to cope and accept who I am because I am not my disease. The right people will always look past these things and see you for who you are!
Angel, I was also diagnosed with Scleroderma when i was eight years old. It has been dormant for fifteen years, but the damage had been done. I couldn't believe how similar our stories are. My scleroderma runs the length of both of my legs on the left side. My left leg is considerably worse, as it is noticeably thinner than my right leg, I can't curl the toes on my left foot, and the skin on my left leg is very tight and it constantly feels like my leg is in a vice grip, which is quite painful. Being diagnosed at such a young age was a challenge. I struggled with my self esteem and was embarrassed to answer questions about it because most people freak out when they hear the word "disease". I finally came to terms with it when i was 17. I needed to think about things I'd overcome in spite of my condition. I liked what you said about accepting who you are because "you are not your disease". And the right people will look past my disease. When I was twenty, I met the man who was to become my husband. He knew well enough not to ask, and that I would tell him when I was ready for him to know. When I told him he asked me "are you going to die?" And when I told him that I wasn't, he said "then I don't care". And I believe with every ounce of my being that some day, I won't care either. Hang in there because it gets better. -Lindsey
I was just diagnosed before Christmas as having a autoimmune disorder but I’m still working on finding out what ones , my dr thinks I have 1 or 2 different once but in my heart this is what I think I have
I’m 15 years old and I had this disease from when I was 4 and was firstly treated by guipsone(kortizone) then Cell crept(autoimmune drugs) and methodyxrate(injection) every week. This disease is painful, but thanks god on everything. My uncle also suffered from this but I think it have something to do with genes.
Emotional video. Reminded of my own condition back in 2012. 6years ago, I was diagnosed with Systemic Sclerosis. Keeping up with Homeopathic medicines. Feeling much better.
my mother died from this disease in 1983. she was only 41 years old at the time. she suffered for 6 years, and the disease was not well-known, and being from India, was poorly understood. the hardest part to watch was how dehabilitating the disease was in her hands, how she could not even lift her arms to comb her hair at night, or to dress herself, at the end. ultimately severe high blood pressure claimed her life. i can only warn people with any symptom - go to your doctor without hesitation.
Thank you for making this video. Systemic scleroderma claimed the life of my grandmother and my son was diagnosed with localized scleroderma. It took two years and a biopsy before doctors could figure out what he had. Building awareness is critical!
I don't have this disease. I have a different autoimmune disease,one that is acquired (hiv/aids). I really hope and pray that there will be a pill (just like in my case) to make people live independent and normal lives. Stay strong,I pray that things will get better in time.
Eating vegan helps but I still get some swelling on my fingers. I took a vacation to Florida, it's so hot and humid there, I found my skin was so much more softer and I was very nearly able to close my hands. Right now it's just my fingers that are affected.
Thank you for this video Im sure whatever information you didn't share or what you don't know cant be said in a a few minutes or hours. Thank you again. My wife (69) and I will be married 50 yrs in August. Last September she was put on oxygen 24/7 first week then only at night time. She has been on oxygen to this day in April '16. As we understand Scleroderma can cause Pulmonary Fibrosis which now seems to be the worst issue. It seems the Rheumatologist and lung dr. seem to be well diversed but still we search. Thank you again. Ron / Dallas TX
I have scleroderma and I’m 15 now I’ve had this condition since I was 9 years old and since then I’ve been on methatraxite injections every week to help it get better I’m also on steroids to help when you think about it I never knew what it was until I was diagnosed with it but now I’m glad I know much more about it, go subscribe to my RU-vid channel if you want me to explain about my condition and how I cope with it with people at school and just in general ☺️ thank you❤️
I’m diagnosed with the scleroderma after I giving birth since 2018 and scleroderma comes up very quickly and also it’s effects to my organs. In 2019 October I’m completely can’t walk n can’t do anything for myself till now. It’s very painful.
Wow, I've never heard of this just learning about it through another video. I think this is an instance where stem cell research might help from what I've seen unheard? I hope anybody with this know I'm thinking about them I would be super scared and I can happen at any age it looks like as well. I lost feeling in my hands, you do learn to do things differently. I'll never snivel again when I get frustrated. You all are amazing in this video 😍
Mary , Keep strong don’t lose your faith you will cure ,I m suffering connective tissue since 2005 and I tell you that I won the battle to scleroderma if you want write me to elirocal78@gmail.com
Mary Ann Yost...sadly, I know exactly where you are a.m. I am very near that point, it has stolen my life away from me....I try very hard to concentrate on positive things...I cannot hold a damn tool anymore but I can hold sick kitties...I don't sleep but baby bottle fed kitties need to be fed and pottied every 2 hrs so...I foster sick/injured/orphaned kitties...they give me a purpose and the reward of seeing them thrive and move on to their furever homes..gives me a reason to try...every damn day.
Mary Ann Yost ask you're dr. If they can give u immune globulin ivg. Once a weak and eat lots of raw fruits and vegetables and stay strong on the inside hope u feel better I have scleroderma myosotis too for 15 years now if u have any questions for me msg me on my f.b shorouq Hamed
Take a look at mycoplasma. I am researching scleromyxedema which I have and found mycoplasma seems to be involved in both diseases along with other pathogens like shigella which there are 4 kinds. I targeted these and found I was more energetic. Scleromyxedema is similar but more rare than scleraderma Good luck, we suffer similar problems.
My neighbor was diagnosed last year with scleroderma. I work as a registered nurse, and just knew her life was no longer going to be the same. Least to say, I was terrified knowing how debilitating this disease is. Fortunately, we have a great support system, and a fantastic rheumatologist whom helped her tremendously. Later we consulted Planet Ayurveda and now she is much better now. Thank you for spreading the awareness and educating the world of this disease.
I lost my Mother to this disease 13 years ago. My heart goes out to all the people it affects it is a horrible disease. I really do hope more research is done into this disease god bless you all
if it's autoimmune, check the gut bacteria...get on immunomodulators/immunosuppresants...xeljanz works on auto-immune disorders..so this along with all autoimmune conditions can be altered/stopped/reversed, IMO. it's like two piles of M&Ms...scleraderma is the black ones, total remission is the white ones...gradually heal your body/mind/essence unit from moving 1 or 2 black ones to the white side every day..and it'll stop the autoimmune response, IMO.
Im 21 years, its been three years now since i have scleroderma i stop studying and can't join university, im just waiting for things to get better. I hate this disease it ruined my whole life
Hey, I was diagnosed with systematic scleroderma when I was eleven (fifteen currently). I wanted to ask if you think going to college can even be worth it with the constant no energy and struggle? I've been agonizing on the question and I can't decide what is best for me.
Please!! We need medicines to control or to stop the skin fibrosis, tightening. Please scientists !? Pharmaceuticals help us 🙏🏽👨🏽🔬🔬💊 This is one of the most strangest, and cruel of the autoimmune diseases. A disease that turns into mummies. Please give us hope. Help us!! 🙏🏼
MY beautiful sister died from this horrible disease ,she was only 29. When I pass on id like to ask God why? No one should have to live with this awful disease. Makes me angry inside.
My wife got diagnosed with it a month ago....the terrible thing is that she`s been sick for 3 years!! and the doctors have been saying that she has dementia all the time. But all of a sudden they took a bloodtest for "Scleroderma" and yes there it was!!.....So what should we do? ...... Regards from Sweden
This is a really good video. Thank you so much for making it. It really helps describe to others what's going on with my body and how friends can help.
Great video! My sister in law was diagnosed with it and her health has gone down the hill very rapidly. She lives in Peru, where there is very little knowledge about this disease. What treatments have helped the people in the video? Would you recommend any doctors that have been particularly effective and helped you carry on a life as normal as possible?
She needs to immediately be put on an ACE inhibitor to protect her heart, blood vessels, and kidneys. Currently, the greatest risk is lung damage. Interstitial lung disease is scarring inside the lungs. She needs a pulmonologist to track this immediately. I was diagnosed last year. In just a year, I’m having to have assisted breathing with CPAP machine. They no longer offer intubated breathing for terminal patients.
Thanks for posting this video. It explains this disease I am trying to locate recipes for a person who is suffering from scleroderma. I wish there was an online recipe book.
I'm going in for checks on this level and that level, eliminating possibilities of a diagnosis visit by visit, and this video right here brought me an odd, 'closure', if you will... P.S. I didn't know the guy from Hells kitchen had scleroderma... I'm a guy that makes jokes in the face of death btw...
YES.......see my comment re: Minocycline and my experience with it. I've now had scleroderma for 50 years.....been on Minocycline about 15-16 years and am doing much better.
My mom never did drink pop...only tea...not even coffee. She died at 78 with scleroderma but had not symptoms of it 3 months before her death. Let's all drink tea. BUT, when I had extreme arthritis pain going off of tea for 2 years elevated the extreme pain wherein I could only place my elbows on an arm & rotated my position continuously. The pause between the rotation helped to ease the pain. I was so sensitive to cold that I slept with an electric blanket & had to rotate my body up to the blanket as I had no heat. I had gone to Japan 1978 working close to a nuclear plant & wonder if this is mimicking scleroderma. My family still does not know that I went to Japan instead of a funeral as a volunteer for less than a week. I have collagen coming out of the pores on my nose. I wish it would all come out as I have developed lumps of it underneath. I believe in Jesus see you in the future. I feel for the kids. What organ produces collagen cause I would like to have part of it taken out.
Would all of you non-doctors please stop advising everything you find online? The most crucial thing is that qualified physicians diagnose diseases accurately. Unfortunately, scleroderma is considered an orphan disease because there aren't enough of us with it (???) and pharmaceutical companies can't make enough money off us until they do the research/development. We need the government to invest more money in learning about scleroderma (and many other diseases). I am now 70 years old; I have had scleroderma for 50 years, but it took 27 years to get my diagnosis.....and I'm in New York and spent years with specialists and in famous NYC hospitals, but it took *ME* to diagnose myself after seeing Dana Delany in "For Hope" in 1996 to put the pieces together. We need your good wishes, not pie-in-sky ideas that only add to our problems.
hello, this is an informative video on scleroderma. my colluegue was also suffering from this condition. he visited many hospitals but didnt get any relief. then one day he visited planet ayurveda and got sclero care pack. now he is fine and fit. thanks to planet ayurveda
my name is Rosemarie. I have scleroderma. but I don't get any help from doctors. when I go to them for pain .they say my sickness don't bad and I don't get no help. I really need some help.it is so painful
You need a rheumatologist who specializes in scleroderma. Do not give up! It took me 27 years to get a diagnosis --- I have had it 50 years and I'm now 70!
@@Sugarbunny8449 congratulations....at present my sister's hand skin has started tightening....and has raynauds issue...can u suggest me some help? We r already seeing a rheumatologist
