My mother has recently been found to have blood in the urine, and her consultant happened to mention that it could be down to her being a carrier of alports syndrome, although the fabulous british nhs haven't offered to screen her - no doubt due to a lack of funding and her not planning to have more children.
She had a son born between myself and my older sister, who was born prematurely and died not long after birth. His kidneys had failed to develop and he was also believed to be deaf.
Given my family history and my mothers recent (and unsolved) case of blood in the urine, would 'viewers' recommend that I be screened before I plan to concieve? I would be interested particulary to hear from women carriers who have taken the decision to progress with pregnancy and male 'sufferers' of alports who have to live with the condition on a day to day basis. Many thanks. Hannah.
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First Helper passmetheruler

replied June 7th, 2011
allports syndrome
I have allports syndrome n iv been trying for kids for 2 years now n still nothing, my father died of the kidney disease at aged 45 n i suffer pretty bad with my kidney but there is treatment to slow the proses down, the kidney disease causes high blood pressure witch i have n it causes me to loose more blood than im ment to now im anemic too its in my family history n will proceed to do so as i have children of my own just wish it was caught sooner x (Rebecca l hanks x)
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replied August 7th, 2012
I have Alports, I also have had 5 normal pregnancies, although my two sons both have Alports & one of my daughters. I live a perfectly normal life as do my children, although I know that ultimately my boys will incur problems & unless medical research finds something new, a transplant is inevitable for them both (my boys are part of a research programme)
I was offered the option of termination, but that was never an option for me as the Dr's couldn't tell to what extent the Alport's affected my children (in utero)
The consequence I have, along with my husband and family is knowing that our children will have to suffer an illness that we knew they had.
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