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http://www.mailonsunday.co.uk/health/article-1070817/The-hidden-health-risks-children-sperm-donors.html
The hidden health risks for children of sperm donors
By Anna Magee
At a recent reunion of relatives on her mother’s side, Kathleen Ruby’s cousins, grandparents, aunts and uncles ranged from 5ft 10in to 6ft 5in, with dark hair and brown eyes. Most were party-loving extroverts.
Kathleen, a 26-year-old psychology student, is 5ft 2in with dark blue eyes. She rarely drinks, is a vegetarian, and loves nature and the outdoors.
‘I stood out like a sore thumb,’ says Kathleen, ‘but it didn’t matter, because I already knew why.’
Questions: Kathleen Ruby, pictured as a child, found out she was diabetic, and believes the condition stems from her sperm donor father
Eighteen years earlier, her mother told her she was conceived using donor sperm.
‘When she told me, it was a huge relief. I had always been so different from all my relatives. Even though I was only eight years old at the time, finding out I was donor-conceived made perfect sense.’
Growing up, Kathleen realised that she may have inherited more than just her looks and personality from the man who anonymously donated sperm so she could be born.
‘Just after I turned 21, I suddenly began to put on weight, and went from 7st to 9st 4lb in under six months.’
Over the next four years, as her health worsened and she continued to gain weight, Kathleen saw five doctors and two specialists to determine what was wrong with her.
Finally, she was tested for type 2 diabetes and high cholesterol, despite the fact that she had no risk factors.
Both were positive, and Kathleen was put on medication.
‘Type 2 diabetes and high cholesterol are most likely to strike people who are inactive and overweight,’ says Kathleen, ‘but I was neither. ‘I didn’t have one risk factor, and neither condition ran in my mother’s family.
‘It seemed like stark evidence of the effect my sperm donor’s genes had on my health. It created questions I desperately wanted answered.’
In the UK, some 800 children are born each year with the help of donated sperm. Under current legislation, babies born after 2005 can access their donor’s identity once they turn 18, yet in the past half century, since doctors began using donated sperm to help infertile couples conceive, some 37,000 children have been born.
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‘I felt grief that I knew nothing about the other half of who I am’
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In 1990, the UK Human Fertilisation and Embryology Act made it mandatory that all such births be registered on a central database run by the Human Fertilisation Authority. Before then, it was up to individual clinics to keep records of all conceptions made with sperm donation.
Many of these records have been lost or destroyed, though, and an estimated 12,000 people born before 1991 have little or no access to information about their genetic histories.
Searching for information
Kathleen is part of a vocal community - mainly on-line support groups and blogs - of more than 200 donor-conceived adults, many of them angry about the way they have been conceived and searching for ethnic, medical and personal information about their donors.
Professor Eric Blyth, professor of social work at the University of Huddersfield, says: ‘Sometimes we think of people born through fertility treatments as just children.
‘We forget that they are going to grow up, have children themselves, perhaps get sick and need treatment. All these things are going to be impacted by the fact that they were conceived using donor sperm, and whether or not they know who their donors are.
Grief: Kathleen, now 26, can get no information about her father
‘Access to medical history is one of the key reasons donor-conceived adults begin to search for their donors.’
Kathleen says: ‘I went from fascination and mild curiosity about the way I was conceived, to feeling grief and loss that I didn’t have access to my biological family, and therfore know nothing about the other half of who I am.’
She called the clinic where she was conceived, but was told her mother’s medical records had been destroyed.
‘I could get no information about the man whose sperm helped create me, or what genetic diseases I might be at risk from.’
Stella Kenrick, a 54-year-old private investigator from Worcester, was 50 when she learned that she was conceived by sperm donation, after an ageing relative told her at a family party.
‘I have never felt I belonged anywhere,’ she says. ‘I feel anger towards my mother for refusing to reveal anything that might help me find my donor, right up until she died.
‘It also means that one half of my medical history is missing.
‘The man who I thought was my father, who raised me, died 22 years before I knew I was a sperm donor child.
‘Whenever a doctor asked what my father died of, I said a heart attack. For all those years, I believed a lie.’
Two years ago, Stella was diagnosed with skin cancer.
‘I was stunned by the diagnosis,’ she says. ‘My mother certainly didn’t have it - she had much darker skin and tanned easily - yet malignant melanoma can be genetic.
‘Had I known there was any family history of skin cancer, I might have spent less time baking in the sun.’
With 30,000 genes now identified that could place carriers at increased risk of certain diseases, family health is becoming increasingly important to diagnosis and preventative health.
Alastair Kent, founder of the Genetic Interest Group, which campaigns for the rights of people to know their genetic histories, says skin cancer, breast and colon cancer have a tendency to be genetic, as do other conditions such as high cholesterol.
‘One of the main advantages of knowing your family health history is that it can urge people to take preventative steps and to have regular screening,’ he says.
Knowing your family history
Four years ago, an online register was set up to help people born before 1991 trace their biological fathers.
DonorLink, which is funded by the Department of Health, encourages men who donated sperm before 1991 to come forward and have a DNA test.
They can volunteer as much - or as little - information as they like about themselves, from detailing their medical histories for any children born with their sperm to be aware of, to being fully identified.
‘Health is a key reason that many people come forward,’ says David Marshall, who runs the site.
Currently, 50 sperm donors are registered on UKDonorlink, all of whom are prepared to be identified, and there are 139 adults conceived with donor sperm - including Stella Kenrick - searching for their donors. So far, though, matches have been made only between half-siblings.
‘There is often an altruistic aim in donors who come forward, where they feel that before they die, they wish to leave things on a better footing for people they have conceived,’ says Mr Marshall. ‘They want their medical details put on record while they still can.’
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‘Had I known there was a family history of skin cancer, I might have spent less time baking in the sun.’
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When Kathleen and Stella were conceived, the screening of donor sperm - if it happened at all - was not sophisticated. Screening was only officially introduced in 1991.
Today, Alastair Kent explains, all donated sperm must be screened for single gene diseases such as Cystic Fibrosis, Huntingdon’s disease and genetic abnormalities.
‘But to screen for any more hereditary diseases, such as bowel cancer or heart disease, would be prohibitively expensive for fertility clinics, and there is no certainty that the resulting babies would develop the condition, because developing them also depends on environmental factors.’
In her five-year search for her biological father and her health inheritance, Kathleen has undergone DNA tests with 14 men she has traced, all of whom donated sperm at the right clinic at the appropriate time - but with no success.
‘Sperm donation just replaces one person’s loss - infertility - by creating loss in someone else - the child the sperm creates,’ she says.
‘That baby will one day grow up and feel the same unresolved loss I feel in being unable to know their heritage, their biology and ethnic history.’
If you were conceived using donated sperm, or if you donated sperm before 1991, you can register on UKDonorlink.
Contact www. ukdonorlink.org.uk or telephone 0113 278 3217.
An under cover reporter was quite put out recently when she posted a message specifically targeting men she thought would jump at the chance to get a single heterosexual woman pregnant- ‘no strings’ etc- however she kept meeting genuine donors from FSDW who didnt give her much of a good story as they were so responsible and helpful lol. She even went as far as to tell one she drank daily- hoping to show how donors dont care - and yet he turned her down, told her what would happen to the child if she carried on drinking and got pregnant, and gave her places to get help! She wasnt expecting it- and tried to write a ’shock, horror’ kind of story - unsuccessfully I think. Anyway, what I would say- as The Child Listener (my ‘proper’ profession lol ) is to choose a donor who you woudnt mind your child meeting if he or she wants to- and someone you can contact incase your child needed a kidney or something later in life! Dont rule out any involvement later on- often there are guys who would make great long distant ‘uncles’ - and your child will thank you for really knowing where they came from. You can give him or her all the love in the world- but you cant be the father- and although they can go through life without one, and with positive male role models instead- Im a single Mum with a very well adjused happy son so Im speaking from experience- they feel much better knowing the facts about how they came into the world. You want to be able to talk about why you chose your donor, and for your child to feel that this man is someone really special who wouldnt turn out to be a complete nut job if they met him. So when youre looking for one, think ‘will my child approve of him as his or her father?’- whether or not they ever meet him. It should be someone you could be friends with in different cirumstances. Some of my really good donors are so supportive of the recipients, and the woman are also in touch - sounds wierd, but it works really well for them- long term. Youll easily find a donor- its the stuff after thats not so easy. So find a good one!