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.
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.
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