My 3yr old son is showing signs of Ra... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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My 3yr old son is showing signs of Raynaud's.

Tiengie profile image
6 Replies

I have had scleroderma for 7 yrs, and was only properly diagnosed with it 3 yrs ago. About the time my youngest son was born. I am a single mother of two preschoolers, battling scleroderma with all of the CREST symptoms and diabetes.

I have read in other articles that scleroderma is not hereditary, but it runs in families. Does anyone know what the difference is? My mother had it as well. Now my 3yr old son is showing signs of Raynaud's and wakes up in the morning crying that his hands and feet are hurting. This disease didn't affect me until I was in my 30's and I have been learning to live with it. It breaks my heart to think my son would get this at such a young age with no time to properly enjoy life.

He is going to see a specialist next week and we are hoping all goes well.

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Tiengie profile image
Tiengie
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6 Replies
SheriFrost profile image
SheriFrost

Im still so new all I can say is han in there and you are both in my prayers.

Meda profile image
Meda

I'm not sure. I've often worried about that. My change came along when I was pregnant with my daughter 4 years ago. I'm the only one in my family who has this.

froggyjc profile image
froggyjc

good luck with the specialist. From what I understand the difference between hereditary and running in families, is that hereditary diseases are related to genetics (in other words DNA and genes). So therefore you are born with it. Running in families means more the environmental/lifestyle factors are more in play. So you might have something that genetically makes you predisposed to get a certain disease, but something needs to trigger it. My maternal grandmother and mother both died from Pulmonary Fibrosis and the doctors at the Mayo Clinic said it was not hereditary, but tended to run in families and that was the understanding I walked away with. Hope this helped. Sending positive energy your way that all is well with your son.

LynnCox profile image
LynnCox

My maternal grandmother had Raynaud's and I've had it for as long as I can remember, but was only diagnosed in April this year when I went to the Dr as the symptoms were worse last Winter and he referred me to a rheumatologist. My sister was diagnosed with Raynaud's a few months ago by her GP. We are not aware of any other family history. I have limited cutaneous systemic scleroderma and automimmune underactive thyroid. My sister's Raynaud's became apparent as she was being treated for overactive thyroid. Our grandmother was never diagnosed with any thyroid conditions but her mother had thyroid disease.

Whilst it may not be hereditary there appears to a family tendency in our family.

JoAnnR profile image
JoAnnR in reply toLynnCox

Dear Lynn: I have been diagnosed with sclerolderma for about 11yrs. and then the rest started, the raynaunds, fibro, sleepapnea, and a few others, but I was curious I have always had been treated for a underactive thyroid and they keep raising the dose and it doesnt work,, I have never heard of the autoimmune underactive thryroid,, how do they determine that? If you don't mind me asking what areas are you affected with the scleroderma, my legs are the worst.. like rocks,, thanks Joann Richards if you rather send a email you can , jrichards1160@yahoo.com

LynnCox profile image
LynnCox in reply toJoAnnR

Hi JoAnnR

The rheumatologist told me last week that he doesn't think my scleroderma is active at the moment. It was diagnosed on blood test results. I have an echocardiagram and respiratory investigations booked for the end of this month to determine whether or not there are any issues in the cardiac or respiratory systems. I have a variety of symptoms, none of which seem to fit with scleroderma - dry eyes for which I'm on eye drops, dry itchy legs, tiredness, terrible wind, etc.

From what I've researched online autoimmune underactive thyroid is also known as Hashimotos Disease. When I was diagnosed the GP went to great lengths to explain to me that my immune system was attacking my thyroid - he has never used the term Hashimotos, though, so I don't like to use it either. Despite the underactive thyroid I have managed to lose weight (through Slimming World) which has helped my general fitness. The tiredness could well be down to the thyroid, as could the dry legs.

Hope that helps but if not feel free to contact me on here or at lynn@lynncox.co.uk .

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