Alport Syndrome

Alport Syndrome - family life, hobbies and interests

Family life and family relationships were extremely important to many of the people we talked to. Family ties are important to many because Alport Syndrome is often inherited genetically through parents and/or grandparents. Alport Syndrome can also affect the relationship between family members such as siblings. In these ways it often links generations together in powerful and sometimes painful ways. We spoke to individuals as well as families and carers to understand the impact on family life, and the importance of hobbies and interests. 

People talked about how their family values and ‘family culture’ affected them as they grew up (see also: People’s attitude to Alport Syndrome and their outlook for the future). Some spoke about their childhood memories and several recounted particular phrases by family members which had stayed with them throughout their lives. Paul said that his mum always told him "You've got to work harder than the next person, to keep level with them” which influenced his attitude to work. Debra said her dad was very private about his condition and she too herself doesn’t like to make announcements and tell people about it. Those whose families were positive, often wanted to create the same family culture with their own children and families. Lucy said her family’s attitude towards Alport Syndrome was to ‘normalise’ it, and that was the pattern she wanted to follow with her own children. Patrick and Kevin both said that Alport Syndrome had been normalised in their families which they found very helpful. Alan said that he grew up with a “pick yourself up” attitude instilled by his mum which he tried to follow.
Other talked about feeling isolated, and a few people didn’t feel very supported by their families. Sometimes people said they held quite different views to other family members. People spoke about seeking support from other people in similar situations through social media or charities. Others got support through their religious faith or through friends and relationships.
People often recalled memories and significant events happening in their families, for instance Mariam remembers feeling very isolated when she started experiencing hearing loss and her cousins didn’t play with her. Karen said that her brother Anthony bottled things up and didn’t always talk about his feelings, and sometimes resented how Alport Syndrome held him back in life. For those with parents who had Alport Syndrome, they recalled memories of growing up with dialysis machines in their homes or getting ‘the call’ for transplant.
People were grateful for the practical support from partners, carers and other family members. Jayne used to go to appointments with her sister which she found reassuring, and Debra said her dad would sometimes come with her to appointments when he was alive. Cynthia said that having Alport Syndrome had taken its toll on her husband who now had a stress-related illness. She said, “It’s worse for the person who's the carer, or the onlooker”. Paul said that after his third transplant a “cloud lifted” for him and his whole family and he wasn’t “grumpy anymore”. Parents often spoke about worrying about their children and spoke about the guilt they felt in passing on the Alport gene. 

People said that they were often trying to balance everything and home life could be very busy. Amanda spoke about running back and forth to the hospital and that at one point her son had appointments with educational psychology, at his renal clinic, hearing clinic and an eye clinic. Robin spoke about how when he lived overseas his wife and him juggled work, caring for their children and appointments in the UK. Angela said, “I suppose I feel a bit like I'm trying to balance - you know - work, hospital, kids, house. Husband.” 

Hobbies and interests
People living with Alport Syndrome enjoyed a range of activities, interests and hobbies, including many different sports, volunteering, travelling and holidays. People spoke about doing these with their families and friends and often wanted to continue normal life. 

People said that having Alport Syndrome made them want to live life to the full and also sometimes to revaluate their lives to do different things. Michael said that Alport Syndrome acted as a “catalyst” for him doing lots of travelling and holidays now before he gets kidney failure. Mariam said that she did a lot of drawing when she was on dialysing at home before her transplant. Alan and Kevin both talked about studying and doing courses whilst doing dialysis. Several people explained how important it was to keep busy and maintain outside interests while waiting for treatment.
Younger people often talked about their career ambitions and sometimes how their plans had been influenced by having Alport Syndrome.
People frequently spoke about travelling and holidays, and how this was important for their enjoyment and relaxation. Several people said that insurance could be more expensive if you said you had Alport Syndrome. Michael said he typed Alport Syndrome into his insurance quote and the price quadrupled. People also spoke about arranging dialysis abroad and having to prepare for this.

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