Newly diagnosed with systemic scleroderma

[Maryam_a]

Hi everyone.

I am 25 years old and was officially diagnosed with diffuse systemic scleroderma in June 2018.

I have poor lung function tests and will be starting a round of cyclophosphamide soon to slow down lung disease. I am nervous as I don’t have children yet and I’m scared about the future regarding fertility. Has anyone got any experience with this?

Other symptoms I have is skin tightening, spotted depigmentation, nail fold changes, fatigue, shortness of breath, loss of appetite and acid reflux.

I just feel a bit lost and very overwhelmed as before being diagnosed I had never heard of scleroderma (as I’m sure is the case with a lot of people) and I feel like everything has just been turned upside down and is moving very fast. It would just be nice to speak to someone who knows what is to come.

[GGhere]

Hello A-S-J

It's nice to meet you but I'm sorry you've been lumbered with this awful disease that we who gather here suffer from. I can understand your feeling of being overwhelmed by it all right now. It's strange, confusing, and seems to be a collection of several conditions. However, you will come to understand it all as time goes by. We have found it difficult when trying to explain to others what is wrong with us as, like you say, no one has ever heard of it. I'm much older than you so I can't comment on your question about fertility - I'm sure some of the younger people will be along to give you their thoughts on that matter. I think one has to be philosophical about it - enjoy the good days and rest when you're feeling tired and fatigued. My consultant said, "we can't cure you but we can manage it." So I've settled for "being managed". Best wishes to you.

[Maryam_a in reply to GGhere]

Thank you Betsie.

Yeah I think actually stopping and accepting I can’t do as much and being honest with myself has also been very hard because I’ve been in denial for a long time. But I like what you said about being managed and I will try and have more of a positive attitude.

It has been lovely to see the support shown on this site, I’m so glad I found it!

Best wishes to you also. I hope you are doing well x

[Redoralive]

Hi! I'm approaching my 24th birthday and have been officially diagnosed for 2 years. With Scleroderma we tend to be classed as high risk pregnancy. That means more check ups and monitoring than the average person.

There are more risks and some of the tablets you take for management of symptoms will need to be stopped way ahead, so you should speak to your specialist before you plan to conceive.

Personally I've been advised not to have children any time soon as I have kidney problems as part of my scleroderma and organ involvement increases the chance of death to me and my potential baby.

I know that's a lot of negatives but the positives are you're no more likely to have a child with scleroderma than anyone else (as our disease isn't technically genetic) and it's not impossible.

The first year or so after diagnosis you'll have a lot of stuff going on, tests and treatments and you'll be trying to wrap your head around everything. There a lot of terrible potential symptoms to this disease and if you do research about it there's a lot of worrying stuff. Personally I find it best to take each day as it comes and while it helps to know about *your* disease, worrying about everything that *might* happen really isn't worth the stress.

[Maryam_a in reply to Redoralive]

Hi Redoralive,

Thanks for your reply! I completely understand that a pregnancy is not possible at the moment because my health needs to come first, especially because of the lung involvement. It’s just scary when they say a side effect of the medication is infertility because that’s a very long term “no” to children.

Yes naturally the first thing I turned to was google, which frightened me because there are so many things that can go wrong. But I will definitely take that advice of trying to focus only on what’s happening now. I think I just need to accept this is part of who I am now and that is what has been the hardest.

Thank you for your reply, it’s been quite a struggle explaining to other people my age what is happening since outwardly I look fine - Any advice on that?

Sending you my best wishes! Xx

[Redoralive in reply to Maryam_a]

My go to if people ask questions is "my immune system basically hates my body and is trying to kill it- and then vaguely mention the actual problems (so with you it'd be the skin and trouble breathing). You will get a fair bit of pity/judgement and because it's so rare basically no-one will have heard of it before. Try not to let it define you as you can still live a normal-ish life and being the "sick girl" reallllly sucks (I've been there). Go about your normal life for as long as you can!

I worry about infertility too sometimes. My struggle with coming to terms with that (and my disease) caused a lot of problems with my boyfriend and we ended up breaking up earlier this year. So my advice would once again to be aware of the symptoms and what to look out for, but don't get too worked up.

You'll get this a lot from a lot of different people but it genuinely does get better with time. This time last year I couldn't eat or drink without choking, my skin was so tight on my chest it was compressing my lungs and making breathing difficult and I couldn't walk 5 steps without being out of breath. I've been on MMF (mycophenylate), Carvedilol and IVIG for a few months now and I have basically no day-to-day problems. The only thing that makes me look sick now is a catheter in my abdomen that I use for dialysis and you can't see that unless I lift my top and show it. So I know it's all new and there's a load of stuff to deal with, and unfortunately we're unlucky in that it doesn't affect many people out age, the good news is that it does get better and with a few small adjustments you can usually live a normal life.

[Maryam_a in reply to Redoralive]

Yeah that’s what is hard, to try and say what’s wrong and explain but without the pity - so awkward!

Do you find that difficult when you are out? Because it’s not a visible illness and outwardly look young and fit? Any tips for a situation like that - sorry for the many questions 🤦🏻‍♀️

Thank you so much, you’ve honestly been a great help and your positivity is inspiring and somewhere I hope to be soon ☺️

[Redoralive in reply to Maryam_a]

The pity is just a thing. I still get it now and I've been sick for almost 2 years. We're young and people our age aren't "supposed" to be sick so when people find out they automatically feel bad for you.

I have my own way of handling it. I tend to just brush it off, thank them for the concern and say something like "I am doing a lot better recently" or "I've got a doctor's appointment coming up and we're hoping for X result so that should be good". If I know them better and feel comfortable I'll be a bit more honest about how I've been coping. Generally I try to limit people worrying about me (my parents treat me like a toddler now because of how sick I got) so I accept the pity but try to tone down the severity of it for day to day questioning.

I mean I'm probably not the best person to talk about looking "young and fit". I don't want to worry you but I was very severely affected by my scleroderma. I had one of the rarest complications- my kidneys failed causing my lungs to fill with fluid, the pressure in my lungs caused a full cardiac arrest and I was clinically dead for 8 minutes. I spent a long time in a hospital bed following an induced coma and when I was finally released I had to learn how to walk again. I was in a chair a lot of the time until earlier this year and I didn't have enough movement to wash because my muscles had given up through lack of use. I'm waaaayyyyy better now- started back in my old sales job earlier this week and i can wash and dress myself and walk unassisted. But a lot of my friends and work colleagues saw me at my worst so I still get looked at as the "sick girl". That being said people who don't know me have no idea I'm sick and personally I prefer to keep it that way unless it's relevant.

This got kind of long again but I think my point is you're not going to be able to stop the pity. Find a few phrases for the common questions and ask for help when you need it. People won't understand your illness because it's not common but as I said before, if you just point out the symptoms like "Sorry I can't go shopping today because my disease makes walking long distance difficult but maybe we could go sit and have a coffee or watch a movie" then you won't alienate your friends and if you look/feel comfortable then you're less likely to attract the pitying looks.

[Maryam_a in reply to Redoralive]

Yeah, I understand that there are a lot of changes to get used to. I think I just needed a bit of time to come to terms with things but I feel ready to go out and meet friends etc again - I will take those points on board because I have definitely been isolating myself when there's no need to do so.

Wow that definitely puts things into perspective, I'm glad things are better for you now and congrats on starting work again - I hope it is going well! By finding this site and reading so many people's stories I am beginning to realise that even though we may share this disease it will give so many varying experiences and like you said it's not worth trying to think of all the possibilities because that takes away from the "now."

I honestly really do appreciate your replies and especially sharing your story. I have felt a lot more positive in the last few weeks than I have in the past year (it may also be because I'm only 2 weeks from completing my degree and honestly did not think I would make it to the end). But I hope to start taking each day as it comes and just make the most of it x

[Geordie_Kate]

Hi, the replies so far are right. Take each day as it comes. I’m 10 years into my disease and you learn to manage it, then manage the side effects. Without treatment I wouldn’t be here by now so I always reflect on that rather than get too melancholic of what might have been. Chemo does run the risk of pushing you into an early menopause but you’re only young so take some advice from your consultant. Falling pregnant during chemo is a no-no but your treatment might change over time. It’s hard but try to focus on coming to terms with right now rather than what it might lead to. Hang in there.

[Maryam_a in reply to Geordie_Kate]

Thank you very much, I think you are all so strong and really appreciate the advice. Yes my consultant said the older you are, the more likely it will happen but the risk is always there. I guess the best thing to do is focus on starting treatment and like you advise, try to take it day by day.

[SherrySanford65]

I’ve had systemic scleroderma since I was 35 years old. I’m 66 now. Five years ago, I was diagnosed with pulmonary hypertension that affects 12 percent of systemic scleroderma patients. I would have a test if I were you to rule it out. The medicine for scleroderma unfortunately cannot bectsjen if you plan on getting pregnant. Try and stay as stress free as possible. Easy to say not so hard to do. My prayers are with you.

[Maryam_a in reply to SherrySanford65]

I had an echo done of my heart to rule out pulmonary hypertension, but they said it would need to be rechecked annually due to my lung disease. I hope you are doing well, thank you for your kind words, best wishes and prayers to you too, it must have been a hard 30 years! 🌸