My niece tragically has battens disease and I am soon to be tested to see if I am a carrier since this will have health implications on my children in the future. If I am a carrier, My husband would prefer to keep this knowledge confidential so that We can tell my children ourselves when they are older and just tell the GP to put info on medical records. This is to protect our children from hearing it inadvertently from another family member rather than myself and risk being given false information that could potentially alarm them. However, I think my sister and my wider family will feel very hurt if I withheld this information from them as we are all being tested and they want us to be " in it together" and support each other. We are very close. How can I explain this in a brief email without offending them?
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Life-limiting illness
I'm so sorry about your niece.
Your husband sounds very sensible - you are under no obligation to tell anyone your results. I'm kind of assuming you think you may be a carrier.
So long as your husband isn't a carrier then your worst case scenario is children who are potential carriers, which is not such a big deal nowadays with the increase in genetic counselling & NIPT.
I wouldn't discuss it with my family either, but surely your children are going to grow up knowing this disease is part of your family history. You can't keep the death of a niece secret really.
I really feel for you 
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