Alport Syndrome

Alport Syndrome and relationships

We asked people how having Alport Syndrome had affected their relationships and friendships. We interviewed single people as well as those with partners and children, and we also asked people about the impact of Alport Syndrome on friendships. People who were already in relationships explained what, if anything, had changed for them and their partners and those who were not in relationships shared their past experiences or described what difficulties might arise for them in the future. 

For those with a spouse or partner, most said they were grateful for their support and valued them being there during difficult times such as diagnosis, dialysis and transplantation. For some people transplant and dialysis marked a turning point in their relationship.
People spoke about how they explained Alport Syndrome to partners. Some had told their partners or spouse early on in their relationship, but others left it until they needed hospital treatment. Most people saw the need for potential partners to know how Alport Syndrome could be handed down to the next generation, so wanted partners to be clear of the risks. Several people took their partners for genetic counselling when they contemplated starting a family. Debra said she wanted her partner to know what he was “getting himself into”. Many people said the genetics of Alport Syndrome impacted their relationship and was a factor in their reproductive choices. Alison said that before she started dialysis, her previous partner hadn’t really understood what it was about and how serious the condition was.
Those who were single hoped any future partner would be understanding. Alison said that she wouldn’t want to be with somebody who wasn’t understanding. Patrick said that if he had a long term relationship, “they’ll have to understand it cos if they don’t then tough, you know. It's a part of me now”. Some younger people hadn’t thought about a relationship or felt it was an “abstract idea”.
As Alport Syndrome is rare, people said they sometimes found it difficult to explain to partners as well as friends because most people had not heard of it. Sometimes people explained it as a kidney disease or condition instead of saying it was Alport Syndrome, as they felt that was easier for others to understand. Katie and Sarah said that they felt friends didn’t really understand what the condition was about, even though they were fine about it.
Some people felt that Alport Syndrome could make life tougher for their partner. They shouldered more responsibility for family and children and they had to cope with someone who was often tired and had periods in hospital. Angela said that she thought her husband might now see her as someone with a health condition compared to when they first met. For one person we spoke with, having Alport Syndrome was one contributory factor in the breakdown of their marriage.
Some people had partners or friends who had donated a kidney to them, which they felt enormously grateful for. Steve’s good friend donated a kidney to him, “I'll never be able to thank him enough for it”. Neil donated one of his kidneys to his partner Diane. Some people spoke about how a transplant affected their relationship and allowed them to get married or have children. One person, however, spoke about how her husband’s blood group was not a good match for her son in the future and her son didn’t want to consider a cadaver donor (from someone who has died). She worried that this would seriously test their relationship in the future if her husband couldn’t donate.
People spoke about the importance of friendship, but not everyone wanted what Kevin called “hand-wringing”. Most people wanted friends to carry on socialising with them as they always had done and not necessarily treating them as different.
Some people said they only told close friends that they had Alport Syndrome. Some people said they didn’t like to talk about Alport Syndrome with friends as they felt that was unnecessary and a possible burden (see People’s attitude to Alport Syndrome and their outlook for the future). Alison said she had a great circle of friends and a “good social life” and celebrated the anniversary of her kidney transplant with them by going for afternoon tea and prosecco. Jayne said that her son’s friends knew about him wearing hearing aids and got his attention when he missed something. Robin said that his friends know he is deaf and tap him on the arm when he hasn’t heard something.

Not everyone chose to be upfront about having Alport Syndrome. Michelle said that her son’s friends didn’t need to know as he looked no different to his friends. Some people mentioned that when they told friends about things like dialysis and transplantation they were shocked. Michael Y recently told his friends about his diagnosis and they were shocked. Some mentioned that their friendships had changed over the years and friends had become more aware and understanding.

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