I know scleroderma can seem frightening at first but it is just an often misused and misunderstood title for this disease as there are SO MANY variations of it. It seems that so far you’re fortunate to not have the worst type. Many people hear the term ‘scleroderma’ and mistakenly believe it is only a skin disease! Very frustrating when people have this attitude as victims of diffuse scleroderma, which is known also as progressive systemic sclerosis, is the more appropriate term used by specialist doctors. There is nothing more frustrating when someone asks what have and when the term scleroderma is used, they think and often say, “oh, that just a skin condition”. What the public as well as some GPS fail to understand is that this awful disease can cause organ damage as well as deformities in the body’s joints and skin. This disease should not be plated down. Yes the severest form of it is rare, making it a lonely ☹️ disease to suffer. I should know because I have it. The good news is though that there is more research being done now and although there is no cure, there are many drugs that help with the disease progression as well as symptom relief. Also I believe that a positive attitude and faith in God dramatically help. So far, I have survived with the worst form of the disease for 14 years! Yay 😁
@user-fi5mn8gv4z
4 жыл бұрын
I pray that you have good in this life and in the next one .
@Xray858
4 жыл бұрын
can drinking collagen cause scleroderma or it helps?????
@MsViva710
4 жыл бұрын
@@Xray858 check with Dr. Brooke Goldner. Check her personal testimony She really want patients to get well. And has a great success rate.
@claudiacastroyaya9504
3 жыл бұрын
Wow thanks for sharing knowing you lived with this for 14 years is hopeful 🙏🏼 I just got diagnosed
@MarigoldsintheGarden
3 жыл бұрын
@@claudiacastroyaya9504 You are welcome I am also training my own service dog She assists me with activities of daily living, as well as alerting my family when I am choking. She saved my life once by jumping on my back,which helped to expel the food from my trachea, so I could breathe again! She also helps me with disease related anxiety, plus is now learning public access. She to visit me when I am in hospital. She is just what us scleroderma-fighters need!
@paula280690
Жыл бұрын
I'm praying for you Chloe! May you be blessed with complete healing in Jesus name 🙏 💖
@canyoudigit5058
5 жыл бұрын
Life goes on and the Brits, who coined the term (during what were very dark times) "Keep Calm & Carry On" are pros at this. Well done SRUK, for these uplifting, informative videos that reveal the most important thing of all, that life does go on. My very, very best wishes to Chloe & Danny. I wish good health and happiness to you both and a long life together.
@marirogers0153
2 жыл бұрын
Hi You are a lovely person and so lucky to have your family around you. My story is much the same, and just very slowly i have more skin issues but also mainly because I am a redhead and experienced so much sunburn growing up. Mainly over time I have had some lupus crossover issues but being positive about what you do have in your life and do not suffer from today is the best gift any medicine could give you…Food and love is your medicine. I am so happy fo you. Congrats‼️
@Pboy7272
2 жыл бұрын
What a gem she is. Glad I ran across this video. Hope you're still well.
@wakinglions747
3 жыл бұрын
Chloe, I understand you take care off everyone, without thinking of yourself, and I’ve done so since age 14. I’ve only been in testing for a few months, and my doctor gets upset when I search out information. As you said, there can be a lot of unfounded garbage on the net, so it’s best to be careful. With a sinking feeling that this illness may be scleroderma, I’m keeping a positive attitude, and becoming a hypnotherapist in the hopes of at least curbing whatever ails my body. My prayers are with you as I continue fighting and staying positive. (Hope your marriage stays as gleeful and positive as you.)
@tulip-111
3 жыл бұрын
Hello yes a lot of garbage on google. Dr told me I have scleroderma ţo. I think the main reason is traumas that we have emotional stress ..i think the cure is in ourselves .and I think body can heal itself
@lexc8714
5 жыл бұрын
Hope things are getting better for you. Bless🙏🙏🙏
@auroraizguerra5505
4 жыл бұрын
Blessings Beautiful 🙏🏻❤️
@allisonsnz
3 жыл бұрын
Thank you!
@MarkyWuWuzHere
Жыл бұрын
I have scleroderma too and know it's hard, I hope you get better Chole
@bellesparks4374
3 жыл бұрын
God bless you with health and joy:)!
@kimberlygeiger9491
Жыл бұрын
I have it, too. I will pray for you ♥️🇺🇸
@timtaylorirwin9296
Жыл бұрын
Are you in Cypres Texas. We are just trying to get the Diagnosis part right now. Your video was very helpful to me and my wife. My wife is the one with the condition. We would love to communicate with you more on this subject
@woodswal
2 жыл бұрын
Congratulations on your 💍 engagement. 👍🏾❣️ From the USA
@lillyrocks2011
28 күн бұрын
I'm scared of this disease.I pray for a cure and treatments to stop or slow down immensely the collagen overproduction. 🙏🏽
@showmestate9237
Жыл бұрын
Had it 6 years now. Has various stages, flare ups, everyone is different.
@beckistewart4707
Жыл бұрын
Hi I've just been diagnosed after 8years of having to pester the GPS and even now just cause I've been diagnosed I'm still getting no help with medication or any kind of help I'm so poorly amd stressed and don't know what to do x
@marikajohnson8257
6 жыл бұрын
It's amazing what your doing. Look up the herb kalawalla :)
@lilaccilla
11 ай бұрын
hello , I use to go to a support group for Lupus and Collagen Disease s . I am aware of it . 2 women had it . Mine is Dermatomyositis since 1991 . I get IVIG s for it . Have you tried it ?
@bluerealty1
5 жыл бұрын
Have you tried the AP Protocol? Henry Scammel wrote a book on the specifics. The use of Minocycline with RA, Lupus and Scleroderma has proven successful for many. Wishing you the best!
@peaceangel-rl2hf
11 ай бұрын
This treatment worked for me. Within 12 months I went from deaths door to normal blood tests. Then using yoga, nutrition and lifestyle changes I maintained normal internal health for the past 25 yrs. I recommend this as a least harsh effects on the internal organs, low dose antibiotics is a cure imo. The source might be like Lyme disease ie a parasite or infection
@evelynwilder1529
4 жыл бұрын
What medicines do they have you on. I feel like a guinea pig at times when it comes to this disease.
@MsViva710
4 жыл бұрын
Please check on youtube for a most impressive personal testimony of Dr. Goldner and th ed vtestkn uh of those she's helped
@sandraprobst412
3 жыл бұрын
Do you get an infusion in hospital with in example ilomedin? This medicine helps to increase the blood circulation in the vessels - it should help to reduce raynauds attacks.Some patients feel that it helps some not.I do this procedure twice a year and since I have done this at least I am not feeling tired anymore. 👍
@Carylina1
Жыл бұрын
I had the infusion where I live in New Zealand. It was awful - 6 hours a day for a week. I suffered a lot during it and it did not help my raynauds. Caryl
@cameliacristea6804
3 жыл бұрын
How are doing today? I hope you are ok
@artheebennie968
Жыл бұрын
I just got diagnosed…
@user-ej6vu7qh9k
4 жыл бұрын
I need help can any one tell me what are the exercises that are useful for scleroderma
@WeAreSRUK
4 жыл бұрын
We've got a number of articles on our website about physio for scleroderma. Here's our most recent one: www.sruk.co.uk/about-us/news/physiotherapy-why-what-how/
@stevelapaglia1169
10 ай бұрын
HVe you looked into Photopherisis treatments “?.
@deuzamarperriera9606
2 жыл бұрын
I do have a scleroderma and I find something to stop the production of the colagem .HALOFUGINONE.Its a chinese.
@Data_-xw7yw
3 ай бұрын
Who gave you the treatment and how are you feeling now ?
@Murat-eq3cr
Жыл бұрын
I am 29 years old diagnosed systemic sclerosis and overlap syndrome
@lillyrocks2011
Жыл бұрын
Hi! I have the Limited. How are you? I was diagnosed the last year. 😢
@lillyrocks2011
3 ай бұрын
@@Murat-eq3crHi! Sorry for the late reply. I have just seen your message. What type of scleroderma do you have? I'm very scared of this disease. 😢 It's difficult. Where are you from?
@Murat-eq3cr
3 ай бұрын
@@lillyrocks2011 i am from Turkey i have overlap scleroderma mix connective tissue disease rheumatoid arthritis lupus antiphospholipid syndrome and scleroderma
@lillyrocks2011
3 ай бұрын
@@Murat-eq3cr wow! I have been diagnosed mids 2022, the last year but I have more symptoms so I suspect I have something else than only scleroderma. And since when and how were you diagnosed? How old are you?
@Murat-eq3cr
3 ай бұрын
@@lillyrocks2011 since 1.5 years i have symptoms but i do not have skin sclerosis more i have arthritis and skin panniculitis joint pains finger arthritis redness allover body with itching attack i am 30 years old now
@teejay8325
Жыл бұрын
I've been suffering with this for 3 years and can not get a diagnosis. Can anyone reccomend a place where they have a clue? I have systemic version. I am getting diagnosed with one thing at a time. The rheumatologist here in pa don't believe in ana negative autoimmune. I am close to suicidal because I can't get treated. I have shiny skin, liver, kidney involvement. I tested positive for ssa/ssb and can't even get a sjorgens diagnosis due to neg ana. My hands turned red, bottom of feet, it caused high blood pressure and they are blaming that for redness. It's crazy. They treating my like hypochondriac. My face has turned into leather. I could go on for days with what all is involved. You already know if you have systemic. My voice completely changed last month. I have problems with every gland I have. I really need a dr who knows about this.
@anne7619
2 ай бұрын
Blood test
@dharapatel1538
4 жыл бұрын
My mother passed away of this' illness
@ayushpatel8989
4 жыл бұрын
How many year she lived with it after she was diagnosisd
@dharapatel1538
4 жыл бұрын
@@ayushpatel8989 she lived around 21year.....last 6year so painfull....this dieses last stage oxygen...
@smileeasyeverydayperfectio5682
Жыл бұрын
@@dharapatel1538 kya wo intestinal lungs disease se safar kar rahen the
@dharapatel1538
Жыл бұрын
@@smileeasyeverydayperfectio5682 yes
@jasanders5877
Ай бұрын
Chloe do you reply. As I'm in desperate situation 🙏🙏🙏🙏. Please talk to me🌺💓
@CherylNkosi
3 жыл бұрын
I just got diagnosed 🥺
@JUNNAPDC
3 жыл бұрын
Hi Cheryl, I know how you're feeling right now. You will be fine. Just take your doctors advice. I've been diagnosed a couple of months ago although I've been seeking for answers about my disease for about 3 years.
@CherylNkosi
3 жыл бұрын
@@JUNNAPDC thank you so much
@deuzamarperriera9606
2 жыл бұрын
Read about halofuginone
@Carrjacked
Жыл бұрын
@@CherylNkosi hi Cheryl, You don’t know me but just know you are amazing and strong. Love and support from Philadelphia ❤
@lillyrocks2011
28 күн бұрын
How are you?
@poonamkrishna7057
4 жыл бұрын
I m a sclerodarma patient.... I m from India... Plz give some sujjetn on it... It's very difficult to live with sclerodarma....
@RockStar-nx4vm
3 жыл бұрын
Use subliminal for it... Go to You tube " meme scleroderma" Listen it for few months..
@cuppingshorts.1365
3 жыл бұрын
Go for Ayurvedic treatment,m also suffering from this
@poonamkrishna7057
3 жыл бұрын
@@cuppingshorts.1365 any improvement
@cuppingshorts.1365
3 жыл бұрын
@@poonamkrishna7057 alot
@cuppingshorts.1365
3 жыл бұрын
@@poonamkrishna7057 I tried almost everything including Ayurveda but failed,den one of my friend took me to Chennai Apollo der one dermatologist suggest me s.n.pandit health care Dr.ranjini she changed my life completely
@zannaxz
Жыл бұрын
does tight skin always mean scleroderma?
@gertzadik
Жыл бұрын
Try the carnivore diet for one month.
@subhashreemajhi9175
2 жыл бұрын
Recently I found my boyfriend have scleroderma....what should I do?? Please suggest me will I leave him or marry him.
@zohrebrown
2 жыл бұрын
He needs to be loved and supported. If you are not willing to do that, then you don't deserve his love.
@carlii.2x102
2 жыл бұрын
If you have to ask yourself that then do him a favor and just leave.
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