My 16 year old daughter has been recently diagnosed with Systematic Sclerosis. She is struggling to cope with all the changes in her body and lifestyle.
Her right hand side of her body is affected mostly and it’s starting to spread around her shoulders and back too. My daughter is in constant pain and fatigued.
Also, she is loosing weight rapidly and this is a worry for me and family.
We don’t know what to do to support her more. Any advice would be appreciated xx
So sorry to hear about this, must be tough for her and you.
Have you looked at the Scleroderma and Raynaud's website? They have a helpline and a community support group - sruk.co.uk/about-us/
I can't help much practically as I only have Raynaud's disease, although my GP is investigating some other symptoms to see if have scleroderma.
So sorry to hear about your daughter, she is far too young to have this disease, and it is difficult to keep positive. Hopefully she is on some drug regime, including steroids and immunosuppressants, I am not an expert but have had scelerderma myositis and lupus 5 years now and I understand the difficulty of adjusting to life as your body changes, but these adaptations can be done.
Steroids should make her feel hungrier and give her more energy hopefully, scelerderma can affect the gut and many of us have to eat smaller meals/snacks more often,( smoothies are often suggested).
She will have to learn to pace herself and listen to her body, which may be more difficult for a 16 year old , who wants to live her life.
As strongmouse said SRUK.co.uk is there to support us all, as this site does.
Good luck and let us all know how it goes.
I’m so sorry to hear this it’s bad enough to be diagnosed as an adult the weight loss seems to happen to most but when they get her more stable it should settle down this group of people on here are an amazing support and we are all here for you and her as has been said to me many times try not to allow it to get you in a state of panic listen to your body rest when you need to and take the medications they offer I take Hydroxychloroquine and methotrexate also Domiperidone and lansoprazole for gastric issues and plenty more all doing there bit to stabilise things this will be her own journey and although some of our ailments will be the same how it affects her will be unique in some ways to her and her body try not Google it lol and highly tecommend you ask to be referred to royal free scleroderma sub team in London I go once a year and they have been a great support for me as they specialise in our condition ask your doctor to refer her xxxx you still see your local team but they support alongside xxx
This must be devastating news for you both, hard enough just being 16! On the positive side early diagnosis is a good thing many people take years to get diagnosed. It takes time to get your head around what is happening and there are so many different ways it can affect the body. Many people only have skin involvement some have more ,everyone has a different journey with this disease.
Talk to your gp about her weight loss and see if you can get her some drink supplements. Eating little and often can help, let her snack and try not to worry if she can’t manage big meals.
Don’t forget this disease although not curable at the moment is manageable and things should improve once she is on the correct medication and it has had time to take effect. Take care.
You really must get your GP to refer you to a Rheumatologist. Treatment thereafter will depend on diagnosis and manage your symptoms. Medication is very personal (we are all individuals), I’m on mycophenolate and hydroxyquinolone which keeps symptoms to painfree stiffness only. Not curable but allows life to be as normal as possible.
p.s. I’m also on insulin for a second autoimmune issue.
Good luck, stay positive.
So so sorry for the diagnosis of your daughters condition at such a young age.I was 63 when I was diagnosed.
The main advice I can give you is to be under a super Consultant who is a specialist in this disease.
Dependent on where you live there are many around.
As Jaq1971 mentioned, The Royal Free hospital is mentioned a lot of times on this site. Prof Denton is the main man.
I live in the NorthWest of the UK & have a brilliant team at Salford Royal Hospital near Manchester.
Be steered by your team & ask as many questions as you can, even difficult ones. Make notes at appointments so you capture all the relevant information.
It's a tricky disease as its individual in its activity. No two cases are the same!
Your daughter is on a very difficult path & she will need the support of family & friends to navigate through all the obstacles.
Involve close family & friends to make your daughter's path easier.
Sometimes hospitals have conferences on the subject. This is a great opportunity to gain a fuller understanding of possible hurdles. Most importantly you can gain knowledge to fight this disease.
You'll be able to obtain leaflets from the hospital on how Systemic Sclerosis can affect different part of the body.
Compile 2 binders, one with information eg leaflets & another with copies of each hospital consultation notes.
The hospital may offer different aids e.g Hydrotherapy ( to soothe & motivate the body) , physiotherapy sessions, light steel gloves for the hands, podiatry etc.
Please ask what are available & the timescales.
I found it hard to cope with a complete change of lifestyle. I was struggling. I mentioned to my Consultant who arranged a group of psychological sessions. These were invaluable to me. Mainly as I berated myself for not being able to do the simplest of things.
Your daughter may have to undergo many tests, lung function, heart & maybe some scans.
During my first few years I participated in many research areas. For me it expanded my knowledge & gave a little back to help others.
Getting the right medical balance for your daughter is important. Not every tablet suits everyone. Steroids are used to give your daughter more strength & fend off viruses.
There are a few drugs which can prevent the disease from getting worse but unfortunately there is no cure.
At least these drugs will eliviate some of the effects.
It will mean lots of hospital appointments for your daughter along with possible admissions.
You both will feel overwhelmed at times. Keeping positive can work wonders & if you both want to cry, cry!
Ask your daughter to keep a diary of her symptoms & how she feels daily. This will help at hospital appointments so you don't forget anything.
I hope this insight will help. BE STRONG!
xxx
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