Alport Syndrome

The emotional side of living with Alport Syndrome and where people found support

A range of emotions came up during each interview. People spoke about the fears they had, and times when they had been confused or upset as well as their feelings of hope and anticipation for the future. Having Alport Syndrome was described as “normality”, “a family legacy”, “one of those things”, “it doesn’t impact my life” to “it changes life… just like that”, “I’m not somebody with Alports, I’m me”, and “I just want to get on with my life away from it”. Cynthia who had three transplants said, “I never come to terms with it” while Angela said “I don't like to think that's the main thing that people would think about me”. 

There were particular “crunch points” which people told us about; periods of time when “reality kicks in” or they faced a particular piece of news or change in their circumstances. These could be very stressful and emotional times, for example:
  • Dealing with or coming to terms with a diagnosis (even if suspected or anticipated).
  • Starting dialysis and getting an access point fitted (e.g. a catheter).
  • Being out of work or having to give up work due to ill health. 
  • Before and after a transplant – dealing with all the emotions of being a donor recipient.
  • Pregnancy and making reproductive choices.
  • Problems with medical treatment and care – not being informed, or not getting the support or help needed at critical times.
  • For carers, partners and family, when a loved one gets very ill or dies.
People also spoke about their day to day issues and general struggles. Watching, waiting and worrying about potential kidney failure affected some people we talked to. Angela described being scared when she realised she would have kidney failure because she didn’t know you could live with it. Those on dialysis talked about dealing with the daily and weekly routines of dialysing and their hopes and fears of being on the transplant list. Paul said the last five years of dialysis before his third transplant were a real strain. People talked about facing or thinking about the future – including not knowing how their (or their children’s) Alport Syndrome may develop. Jago said that dialysis really scared him in the future, much more than a transplant. Jayne worried about both her sons’ hearing loss in the future. Angela said she wanted to make sure she was healthy until her children had grown up. Katie and Sarah felt positive about the future, but also were not sure how Alport Syndrome might affect them. People said fitting in all the regular appointments and check-ups whilst working and trying to maintain a normal life could sometimes be a struggle.
Frequently people said they tried to live “normally” and wanted to retain normality often through having hobbies, interests or going on holidays. They also talked about living for each day and trying to stay positive. Others spoke about not wanting to be “defined” by having Alport Syndrome (see People’s attitude to Alport Syndrome and their outlook for the future).
People often spoke about the rarity of the condition and how often other people had not heard of Alport Syndrome although they were not surprised by this. Debra didn’t like to “announce” to people she had Alport Syndrome and only told close friends. Michelle felt that her children were “unique” as their strain of Alport Syndrome (autosomal recessive) was “less serious” than other strains.
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In terms of emotional support, family and friends were often important although some people described feeling isolated and lonely. Cynthia said “it's worse for the person who's the carer, or the onlooker”. Some people said they didn’t want to bother family members or wanted to keep Alport Syndrome away from their daily lives. Paul for example, said he tries to direct the anger he has “against the disease” by keeping it away from family life. Parents often spoke about feeling guilty if their children had inherited Alport Syndrome.
Support 

Other types of help and support were also crucial for many people. Several had sought counselling or psychological support. Alan said he had bouts of deep depression and found a renal counsellor who was “compassionate”. Some people we spoke to were on antidepressant medication. Some said that the medication they took could cause their emotions to be all over the place (see side effects). Amanda said she thought that getting psychological support was crucial because the condition is so rare. After the traumatic experience of going through her transplant, Mariam said she saw a psychologist who helped her with her sleep problems. Sammy said she felt her religion and faith are what has “kept me going throughout”. Robin said he preferred to have more information than talking with somebody externally. Paul said he didn’t like to socialise with others with Alport Syndrome and said this was his “defence against the disease”.
Many people also found support through connecting with others via social media and charities. Some got involved in transplant sports, or charity events. People spoke about feeling less isolated and knowing that others understood what they were going through.

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