Sjorgrens Syndrome Fao Sqad

[kvalidir]

Hi Sqad, you asked me to update you via a new thread regarding the Sjorgrens Syndrome, and he's now had a positive lip biopsy result. He's due to see the consultant when he comes back sometimes next week as he's away til after the weekend, but any thoughts on anything he should ask etc or observations very welcome. Thanks x

[kvalidir]

Hi AuntLydia, to be honest I don't know a lot as he's freshly diagnosed, and I've not yet got the bit between my teeth about this yet, as I've had a lotgoing on myself lately. He had a raft of blood tests after I bullied him into going to the Dr about a large lump in his throat and his puffy eyes, and they came back with him testing positive for both Sjorgrens antibodies, then did a lip biopsy which has also come back positive. He has a white blood cell count issue too, but anything else I have no idea about yet and he won't be able to see his consultants til after he gets back so that'll be a week or more. I believe his arthritis is rheumatoid. Thank you so much for the info, there's a lot of stuff on the net but nothing quite like first hand experience. x

[kvalidir]

I had Ethandron, prior to meeting my partner, decided to never have children of my own due to the 1 in 2 chance that my children would stand, however things change, but I am concerned, as Sjorgrens syndrome it says has an hereditarily increased chance of having 'an auto-immune disorder' though not necessarily Sjorgrens itself, which might up the Type 1 diabetes risk even more than 1/2, but I can't find the data to back that up. I manage my diabetes like a military manouvre and it minimally impacts my life as a result but it does impact it none the less, so it always seemed not the thing to do deliberately.

[ethandron]

Hmm. I’d never thought of it to be honest, until I asked you the question. I think I would still have gone ahead with a pregnancy if I’d have known, rightly or wrongly.
Our son is like you, he has a very lively interesting life which his diabetes has to fit in with, not the other way round. He has one of those patches which Theresa May has, to monitor his blood glucose and that makes it all so much easier.
I know it’s very different for a female type 1 starting a family, I wish you and queenie whatever you wish yourselves, can’t be easy.

[kvalidir]

Thank you, yes it's one of those things, I'm a very high risk of having children affected so always thought I never would, but as you say it's a different matter if you get pregnant, I wouldn't ever consider a termination, I was more thinking of the quality of life of the babies not myself, that's just one of those suck it and see things :)
I still use a pens and work it out myself ( I'm a control freak) I couldn't get on with an insulin pump at all, I did try one and hated it constantly attached to me, so I'd rather stab myself occasionally, and I was pretty sure I wouldn't like the patches but I would be willing to give those a whirl as well, but i'm just super used to the way I do things really so didn't delve too deeply into them.
I have an appointment next week oddly enough with a new diabetes consultant so he might have other ideas :)

[ethandron]

It’s all so very personal I think, diabetes control. And confidence in your own regime. I know a youngish chap who won’t change from drawing up insulin in a syringe, to a pen, because he’s happy doing it that way and the prospect of altering it is a big step too far for him.
These patches eliminate the need for finger pricking but I do know not all health authorities will fund them, our son funds them himself.