I’ve recently been diagnosed with Diffuse Systemic Sclerosis at 35, after about 9 months of experiencing various symptoms. One week ago, I saw a rheumatologist who prescribed mycophenolate due to the progression of my symptoms, which include some of the following: Raynaud's, skin hardening, swollen hands, heart palpitations, shortness of breath, and painful joints.
Since then, I’ve been referred for urgent scans on my heart, lungs, and gastrointestinal system, and to a dermatologist. I have a cardiologist appointment in October and have also been referred to the Royal Free Hospital in London. They’ve scheduled me for January as an urgent case but are trying to speed things up.
The first few weeks were overwhelming—I had severe panic attacks and was prescribed beta blockers and citalopram to manage my emotional state. I’m feeling a bit less anxious during the day now, but still very lonely. The doctors, including my rheumatologist, haven’t been particularly supportive, and I’ve had to push hard to get to this point. Without that, I fear nothing would have been done.
I’m really unsure about my future quality of life and where to go from here. I know it’s hard to predict as everyone’s journey with this condition is different, but how serious can this get? I’m struggling with whether to tell my children and friends. My husband is taking this very badly, especially after losing his first son’s mother to cancer a few years ago—his son now lives with us.
Sorry for the long post, and I know it sounds a bit grim! I’m just trying to wrap my head around everything. Thank you for reading, and I’d appreciate any advice or shared experiences.
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Sebastian2024
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Thank you for sharing and being so vulnerable with your story. You have come to the right place - this is a wonderfully kind and supportive forum - the people really are amazing on here.
So sorry you are going through all of this. I remember feeling very similar to you as I was going through the diagnosis stage. I am so glad you have advocated for yourself, got your diagnosis and are being treated. It is wholly overwhelming once you have the diagnosis but it sounds like you are getting all the tests you need to ensure you are getting the care that you need. Keep pushing if you have to - you know your body best.
Dr Google is the worst. The best advice I got was to not doom search…. Everything that seems to come up is often worse case scenario and can instantly trigger worry and anxiety. As you say, everyone experiences this disease differently and many live good lives with it for many years - you are not alone - there is a whole tribe of SSC warriors here to help and support you here.
I found it difficult to tell some of those close to me about the disease but have found when I did, they have been supportive and it helps to know I can chat to them when I need to.
Ask any questions, share any concerns and this forum often has an answer.
I can very much relate to the loneliness of having systemic sclerosis, which is why it’s so good to have this UK-based community to share on and give and receive support from others who have been in or are new to same/ similar diagnosis. However my diagnosis of SSc last year was very hard won, meaning that I had years to learn up and fight for correct diagnosis and treatments. So I don’t know if the lack of real understanding from my immediate family and friends is because of this or because they don’t really want to know.
My youngest sister is a sweetheart with a lifelong disability of her own and has recently joined SRUK online and absorbs what she can - and what a difference it makes to have a family member who isn’t hiding their head in sand. My husband is also my unpaid carer so has been through most of this at my side but sometimes gets understandable compassion fatigue and, as far as I know, doesn’t look up online which is good as I don’t want him getting the wrong idea. He told me he’d read the latest SRUK magazine recently and quizzed me about what limited and diffuse meant and wondered what sort I have. So I explained that, in my case it wouldn’t make much difference because some have diffuse with rapid onset but then it slows right down and they go on to live a good quality of life with relatively stable disease. Whereas others have a slower limited type which evolves over many years but they can often end up in a similar or worse place. Basically everyone is different/ unique with this disease and a lot is about which antibody we carry as this usually tells the consultants more about how things might progress and which treatments may help. I carry a rare scleroderma antibody associated more with diffuse. But even when it’s limited the risks and severity are much the same so my rheumatologist just calls mine Systemic Sclerosis, taking her lead from the professor at Royal Free whom I saw privately for a one-off consultation last year.
When you say that your husband has taken this diagnosis badly this sounds like a real problem to me. It’s so important that he learns about Scleroderma alongside you rather than comparing it to cancer - which can kill but can also remit or even be completely cured sometimes. There’s no cure for scleroderma yet - but it doesn’t make it a killer disease. Mycophenolate and other stronger (eg biologic and stem cell) treatments can pretty much stabilise the worst symptoms for years, if not sometimes even for life.
So there’s lots of hope and the main thing is getting quick diagnosis as you have and being able to access the best treatments early and having regular tests and knowing as much as possible about these and about your condition.
Maybe show or read these replies to your husband if you think it might help so he doesn’t compare you to his late wife but instead focuses on being your advocate and best friend. Then you can both decide on whether or how to tell your four children. In my experience honesty is best but there are ways of communicating about what you have wrong and the fact that it’s probably not going to be a straight forward journey to find a treatment but you can do it with their help and support.
Things are improving all the time, new treatments being trialled and perhaps you could participate (I just posted here about a new clinical trial last week) in one? Maybe your family could have some fun and feel useful to you by getting involved in fund-raising for SRUK’s research and awareness- raising projects for example? Just some thoughts - and much support and hugs too Xx
I was diagnosed with Scleroderma in 1976 aged 30. I had swollen and clawed hands, rigid skin on arms and legs and to a lesser extent all over my body. I also had difficulty in walking any distance and had problems with swallowing. Raynauds was also present. I was treated with Penicillamine which doesn’t seem to be used now and at almost 78 I’m in better health than most of my friends. I still have slight problems with Raynauds and a slightly clawed right hand but otherwise I’m fine!
Sorry to hear about your struggles to get help. That is so frustrating. I am a very mild case so can only imagine how you are feeling but I do understand the anxiety and stress side. I find mindful meditation has been a great help to me. As little as 10 minutes a day can make a difference. Good luck!
Hi Sebastian, I’m so sorry you are having such a horrible time. I think anyone who has been diagnosed with this disease has the same initial reaction. You are having all the right tests and will get all the treatments you need and that is the thing to remember about systemic sclerosis although it is not curable it is treatable.
The most important thing at the moment for you is give yourself time. You can tell your family when you are ready and only you know when that will be. Maybe once you have a clearer understanding, and all your test results back.
Just take it daily at the moment, try not to worry about the future, you are right in saying no one has the same journey with this disease but we all get through together. Take care.
Hi,I'm sorry to hear of your diagnosis. Your case sounds like mine. I had a really bad bout of flu in Dec 2016 which I never fully recovered from. This apparently was my trigger.
Unknowingly I had the Scleroderma ANA antibody just waiting for something to set it off. My Consultant explained it can be triggered by many things, viruses, stress etc.
She asked if anyone in the family had an auto immune diseases.
My father's brother had Muliple Sclerosis ( though I didn't know this at the time) & one of my aunts had Rheumatoid Arthritis. So both were on the auto immune spectrum.
It seems possible I had a wonky gene. She explained that none of my siblings would get this disease but their children could. It seems to skip a generation. Lucky me!!
Only two of my sisters have children so it was important to make them aware of the possibility.
At least in this way being forewarned gives ammunition when symptoms start to show.
In my 40's I was diagnosed with Lichen Sclerosis out of the blue. The Consultant I saw explained that I could be open to other auto immune diseases. I didn't realise at that time how serious they can be.
I was 62 when I started to have weird sensations, pins & needles in my hands then my feet. I had difficulty walking as my ankles, knees & hips were stiffening up. The bottom of my legs were so tight & red raw. They looked like I had a serious case of sunburn.
I remember saying to a partner at the time that I felt as if my body was at war. I was away on holiday for a few months & visited an excellent private German Dr.
Initially all the blood results showed massive inflammation in my body. He put this down to the result of the flu virus hitting me hard. He said to give my body time to recover & it should right itself.
I was so happy as I thought I was going mad & over thinking things.
At the same time one of my best friends had only been given a short while to live. She was in Australia.
I flew out in the February 2017 to be with her. Whilst there it was mainly my feet that was an issue. Walking was difficult. Whether the adrenaline was pumping around in my body to help me get through this period I don't know.
I returned back to Spain in May 2017 as I was there for quite a few months. Not long after I went downhill fast. I lost 7lb in weight, struggled breathing & could hardly walk.
I went back to the German Dr who took lots more blood tests. The end result being a diagnosis of Acute Cutaneous Diffuse Systemic Sclerosis. He told me I needed immediate medical treatment.
I came home to the UK armed with a letter from the German Dr stating the diagnosis & a copy of all the blood tests.
I took all these to my local Dr who had never heard of my disease! A good start!! He referred me to my local hospital as an emergency case & prescribed me with pain killers which had no effect.
This is where my fight began!
Three weeks later I was in agony with no response from my hospital. I went back to my Drs who checked on his computer. The local hispital came back & said as far as they were concerned I wasn't an urgent case! I was distraught not knowing what to do!
At the same time my younger sister was a medical secretary at a hospital near Manchester. She enquired if there was a specialist Consultant who delved into this complex disease. The answer was yes & she was one of the top Consultants who gave talks in Europe etc. & wrote a lot of research papers.
After a referral from my Dr I saw this Consultant. She was brilliant & her team exceptional.
This was the start of my journey.
I felt fear of what the future would hold & unsure what to do. One thing I knew I would fight this disease tooth & nail. I was also open to any treatments, any hospital stays going forward.
It was easier for me as I have no children & I had retired early. I only had 2 dogs to find help with.
You will need the support of family & friends along the way. Be open with them & explain where you're at with this disease so far. The hospitals have great leaflets which are really helpful to family & friends to understand how this disease can progress. Keep a folder at home to put them in.
Sometimes hospitals will have conferences about this disease. They can be very beneficial to friends & family so they can get a better understanding.
As others have mentioned keep away from Google as it can frighten you to death.
Be steered by your hospital team.
Catching this disease early is a great bonus.
Quite often it sits fairly silent or isn't diagnosed early enough & then it progresses behind the scenes & can affect your major organs.
Mine was caught early, but is individual to me. Each case is different in extremes & symptoms.
Write a daily diary of how you're feeling both physically & mentally to aid you on your hospital appointments. Take a friend or family member with you & ask them to make notes.
Make a list of questions & fears ahead of time. Don't be frightened to ask anything as you need to know where your disease is up to & how it's likely to progress.
Microphenolate is given to manage & stop the disease progressing.
For me it didn't work as my skin kept tightening. By Dec 2017 my skin score was critical.
I was offered 2 options:
1. To continue on Microphenolate in the hope it would kick in at some stage & start to halt the progression
2. To be put forward for Stem Cell treatment.
My Consultant explained the risks of the second option.
I couldn't carry on as I was so I made the decision to try for Stem Cell treatment.
It is only offered in the worst cases & where there is no organ damage.
I had to go to The Royal Hallamshire hospital in Sheffield for extra tests to ensure my body would cope with this invasive procedure.
I took the tests & passed. In April 2018, I was admitted to have a certain amount of new baby blood cells extracted. These had not been turned to rogue cells at this stage.
A month later I had 5 day of Chemotherapy & the stored baby cells put back in my body. I had a stay for three weeks in total.
Now 6 years on the treatment for me has been a miracle.
However it's not the same for everyone.
Some people don't pass the extra tests before the green light for the Stem cell treatment. While a few others who have had the treatment don't seem to have improved as well as me.
It can be a lottery.
It must be SO difficult & demoralising for the Consultants trying to help & pioneer this treatment.
Hopefully Microphenolate will work for you & your disease can be managed.
Whatever happens stay positive & fight this disease as much as possible.
It is a tremendous weapon.
You will have many days when you feel down & want to cry.
My advice is "Cry & let your emotions out"
Take any help offered along the way.
I took everything offered, hydrotherapy pool, physiotherapy, phycological sessions, podiatry insoles for my shoes & research initiatives.
Ask for anything that helps you recover & feel better.
I hope you can digest my story & that it can give you hope. Xxx
I can't really add much to the other replies other than be patient with Mycophenolate, it took me 3 months before feeling the benefit and then it is gradual.
Hi Sebastian. I agree, not much to add - waiting for the Mycophenolate to kick in (normally around 3 months). One thing I would say is, if you get any sort of illness eg flu, stop the Mycophenolate for a few days until you are better. In my case I had a terrible bout of gastro enteritis a few years ago which lasted 10 days and was ghastly. It was during lockdown and despite 3 phone calls to different GPs at the same practice, none of them told me. It was only when seeing my consultant soon after did she tell me that I should have been advised to stop, the duration of the illness would have been shorter! She duly wrote to my surgery telling them this. So work on the basis that most GPs are unware of the complexities of the disease. I think most people tolerate Mycophenolate quite well, so I hope you do too.
In the meantime look at the SRUK website, lots of helpful information on there as well as on this fabulous group. I tried compression gloves for the painful hands which helped (now not needed). Also stretching exercises for the worst affected areas (some of these on the SRUK website). Once you are in the system and have a proper care programme in place you should feel reassured. Very best wishes.
The Royal Free hospital in London is the National Centre for excellence in Scleroderma under Prof Chris Denton you will get the best care bar none. They are considered a centre of excellence world wide with excellent diagnostics, treatment and research.
I was diagnosed 22 years ago and my prognosis was poor 3years was mooted). I’ve out performed but modern medicine has excelled.
Since my diagnosis with systemic scleroderma and interstitial lung disease etc. mycophenolate has been licences and I benefited as a trial patient. I’m trialing , Nintendinab and toxcilimab to see if there lung benefits.
The most important advice I can give is to stay positive and enjoy life.
You can be diagnosed with scleroderma and now often go on to live a near full life in both longevity and quality. You are still young and often women have children post diagnosis with tailored treatment and guidance from the specialist teams.
Please press for your earliest referrals and be your own advocate. You can join the SRUK and get newsletters and the Q&A info from Prof Denton and team. Please ask also to be referred to The Royal Brompton for your lungs. If your rheumatologist won’t do this then almost certainly the Royal Free will as they work closely together.
Through the SRUK you can join a local group. There’s nothing like meeting a real person to talk about your concerns.
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Recently diagnosed with systemic scleroderma 
Worsening Raynaud’s 
Abnormal ECG
Advice please!
Newly diagnosed
