Daughter diagnosed with systematic sclerosis

[Haneefa123]

Hi my daughter was recently diagnosed with systematic sclerosis. Is there anything at home I can do to make her life a bit more comfy?

[fairy56]

Hi Haneefa123, welcome to this wonderful site, we are a friendly group and will always offer advice if we can, you and your daughter will find this site very helpful. As for making your daughters life more comfy, (by the way how old is she), keeping her warm is very important, so blankets and slippers essential, there are products you can purchase to keep her hands and feet warm. It is important your daughter listens to her body, so if she feels tired, rest. When she can, some gentle exercise, and try to get a little fresh air everyday. Can I ask what medication she has been prescribed? sometimes it can take a while for them to work, and sometimes it may be changed to another medication if the first doesn"t work. Another piece of advice I can give you is make a list of questions you/she may want to ask when she has an appointment at hospital. I hope this has been helpful, and remember we are always here, you and your daughter are never alone, sending you both positive thoughts and love xxx

[Haneefa123 in reply to fairy56]

Hi thank you for your reply. She just turned 11 on the 8th of March. I will list her medication later on in the day as I don't remember them like this.

[fairy56 in reply to Haneefa123]

Hi, your daughter must be confused by her diagnosis, I suggest you contact SRUK who will be able to send you literature to help you and your daughter to understand the condition. I am presuming you have notified her school, because there may be occasions when she will be unable to attend. As you may know this particular condition is very complicated and very few in the medical profession know anything about it, so it"s always good if you can be under the care of someone who specialises in it, they are usually attached to a rheumatology dept. Just a small point, if you research our condition, try not to read the extreme stories, far better to write a post on here and someone will be able to reassure you and your daughter.

[Thamila in reply to Haneefa123]

Oh dear god bless her

[MissusTee]

Hi,

What type of systemic sclerosis does she have, is it diffuse or limited?

[Haneefa123 in reply to MissusTee]

It just affects her skin

[MissusTee in reply to Haneefa123]

That sounds like morphea. I'm hoping that she is seen by a rheumatologist.

[SVBO]

Dear Haneefa, my daughter was also diagnosed with SS when she was nearly 10 y.o. She was treated in GOSH hospital for a month with steroids and chemotherapy, then we started our recovery journey. And as nobody really knows the reason why it starts and definite way to treat it, my husband and I started an extensive research on alternative ways of treatment. As he is a medical doctor by education, i trust his opinion. We have found that elimination diet (Paleo and AIP) helped her to find the food groups which upset her digestion. We found that switching sugar to honey helped fighting the inflammation in her body. We find beekeeping products quite useful. Yoga made her flexible again. We started taking medicinal mushrooms recently - which we all like. Now my daughter is 12 and feeling much better. She lives a good life, the same as other children her age - she dances, plays tennis, plays music. It wasn’t easy for all at first but now it feels almost normal. Wishing you strength and sending our love. If you have any questions please do not hesitate to ask. ❤️❤️❤️

[Haneefa123 in reply to SVBO]

Wow that is so good to hear x

[Sarog72]

Bless her I have had it since 2009.i have gud days bad days I just try n get on with things does she get pip mine in my arms hands shoulder but at min having trouble with my joints tell her to keep positive wish her all the best hope this helps xx

[Haneefa123 in reply to Sarog72]

Thanks x

[Bec9680]

I would like to share something I wish someone would have told me when I was first diagnosed. When you have autoimmune diseases the immune system is trying to fight something foreign in the body & is losing and gets confused. You have to find doctors that will test for root cause for autoimmune. Most the time its mycoplasma bacteria I have systemic scleroderma and I tested positive for mycoplasma pneumonia. I’ve been on tetracycline antibiotics for about 8 months & symptoms are improving greatly! I’m able to go back to work partime. Please go to roadback.org to find a doctor near you and read all the success stories it’s amazing.