Long shot - Anyone know about blood disorders and various other medical conditions....(or anyone who can google well....) Please!!!

[Aimsmum]

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I have had a look and cant seem to find anything that starts with a ´g´. My research skills are somewhat lacking tonight.
There are a lot of conditions out there, some serious and some not. Whatever the problem may be I think I you do deserve a right to know if the problem is hereditery and could cause future problems for the children. Perhaps there is a reason as to why she wont tell? Is it potentially embarassing(although unless it involves farting, pooing or vomiting then it cant be that bad)? I would mention your concerns and tell her that you are not prying into her personal life but if this is potentially genetic could she put your fears to reast and let the mfamily know.
Best of luck with it all.

The only thing i can find begining with G is genophotodematoses. But this is a term to describe a range of photo sensitive diseases.
A skin disorder that is sensitive to sunlight and sunshine, what i did notice though is that it usually picked up as a child.

Perhaps she is a bit scared - but clearly wants to talk otherwise she wouldnt have said, it begins with G. I think she wanted your mum to know what it was and put her mind at rest.

My advice would be, wait until she gets her results and then find out the potential of this being carried to your children.

If she doesn't want to say could her doc send the info to your doc to assess the situation?

sorry, thinking about this, the term geno-photodermatoses probablyt direactly means, genetic, dermatitis caused by sunlight. So a very general term. Back to the drawing board.

You say this is in your mums family, just her sisters? Is this in any cousins etc on either grandparents side? If it is not, i would wonder if the inheritance is recessive, meaning you would need two copies of a faulty gene, one from mum, one from dad to be affected. That being the case, for you to have inherited and displayed symptoms your dad would have to have the faulty gene too, and if you only inherited one copy then you might be a carrier but again, your childrens partner would also have to be a carrier, if that makes any sense. If this is a dominant condition (meaning only one faulty gene copy required to display symptoms) you wont be a carrier. Of course there is a 50 50 chance of inheriting the faulty gene so it might not continue in your bloodline. Does that make any sense? This is total guess work based on what you have told me about your family. Has it only affected the women in your family?

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Have you looked up porphyria

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If she has been told it runs in families I would suggest she tell her GP that her family are concerned and could he/she write it down for them and point them in the direction of some useful information. I do not know a doctor who would not be happy to do this, personally I write down the name of any unusual diagnosis I make (ie anything that is not back pain or a cold!) and give it to the patient with some written information to stop them googling and getting scared.

My uncle had lupus, there are 3 types systamatic, discoid and drug enduced. the first is to do with the organs or effects them i should say it is an autoimmune disorder where the own bodies defences does not recognise its self and attacks body tissue. the condition comes and goes and there are many treatments available ...omega 3 apparently helps as well as anti malaria drugs, discoid is the skin condition where you get whelks over your body this also can appear with systamatic( excuse spelling). the key is to stay fit and healthy , look after your body eat well and look after your skin as it can become sensitive.

SLE ( systemic lupus) isn' straightforward in terms of genetics. There are increased tendencies towards autoimmune diseases like lupus but not to the extent where family members would be offered genetic testing or screening. Wouldn't be linked with sarcoid although can have similar symptoms in some cases.

Someone suggested asking the GP if the sister wouldn't tell all. This would be highly irregular in the absence of severe/ life-threatening genetic conditions or cases of infecion which could have life-altering consequences and would be a very last resort for the GP.

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I am Lupus anticoagulant positive, it has never affected me and I only found out through a random blood test when I was about 18.
The only time time I am treated for it is when I am pregnant as you are more likely to develop a blood clot. I take low dose asprin daily and have to have clexane injections after the birth.

Don't know if this helps you at all, but wanted you to know that my experience with it has been fine.