Alport Syndrome

People’s attitude to Alport Syndrome and their outlook for the future

People spoke frequently about how they coped and managed living with Alport Syndrome. Some said that having Alport Syndrome was “not a big deal” or a “massive issue” for them, but others had mixed feelings about the condition (see Emotional side of living with Alport Syndrome and where people found support). These feelings sometimes changed over time. At certain crunch points, such as dealing with or coming to terms with a diagnosis, or being out of work or losing employment, people experienced stress and heightened emotions. At these times people required extra support. Jayne and Amanda said it was the unknown that they worried about, particularly for their children. People also spoke about trying to remain positive and maintaining an optimistic outlook through challenging times. Lucy said she took the approach of being “positive and proactive” for the future of her children whilst Jayne said that although she had to fight to get her son’s hearing equipment at school, it wasn’t “all doom and gloom”. Kevin felt having Alport Syndrome “wasn’t as bad as you think”. Dee felt that her condition was manageable. Frances said that whilst she worried about the future for herself and her son, she also felt very positive.
Several people spoke about “normalising” Alport Syndrome in their families. Lucy said that it had been “taken for granted” in her family when she grew up. She wanted to adopt the same pattern for her children, “to make sure it is just the norm... and there is no kind of before and after line where they're told something and there's an announcement and it's worrying”. Alison said she tries to live as normal a life as possible after her kidney transplant. Kevin said he grew up with Alport Syndrome being “entirely normal” for him and his brother. Paul and Christine spoke about making the most of everything. Paul said that he felt he had to have “something to fight for”. People said these things whilst acknowledging the difficult times and challenges (see Emotional side of living with Alport Syndrome and where people found support). Cynthia was in a lot of pain and said that looking back although there was also “no let-up” with Alport Syndrome, she felt she had had a “good life”.
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Frequently people spoke about the support they received from their families or loved ones (see also Alport Syndrome - family life, hobbies and interests). People said that their attitude was often shaped by this. Angela said she had a “get on with it” attitude ingrained in her as a child and she took the same approach now with her children. She also said she was a “realist not an optimist”. Kevin and Paul both said they preferred to talk about other things aside from Alport Syndrome, whilst Robin said he didn’t like to “dwell on it”. Although several people spoke about not wanting to talk about Alport Syndrome, others had sought out talking therapies and felt it was important to speak to others about living with Alport Syndrome.
People expressed different opinions about information, some felt that having information had helped them cope, but others found it made them feel worse. Michelle wondered whether too much knowledge about Alport Syndrome could be bad. Kevin advised others not to look up information online. Other people like to look up information. Donna said that she connected with others through online support groups: “I think it's fantastic that there's people out there, that you can talk to and compare notes”. Paul said he felt ambivalent about connecting with others but did post messages and helped others on an online support group because he felt he could answer a lot of questions (see Alport Syndrome - getting information). 

Many people’s positive attitude was shaped by hope for the future because of medical and research advances. Some enjoyed being pro-active by helping with research, raising awareness of the condition and some were actively involved in charity events and online forums. Steve said the development of kidneys from stem cells was “promising”. Neil and Diane, and Angela all felt early treatment with blood pressure tablets to “hold off” and prevent kidney problems was encouraging. Robin who had gone through two transplants said he felt much better informed now about medical procedures. Amanda felt differently and said she didn’t like to get her “hopes up too much” about scientific progress because there would likely be a cost for the NHS.
People often spoke about living in the “here and now” and some people said they tried not to think about the future too much. They spoke about their hobbies, interests and holidays as well as work and relationships which helped them cope. People had different concerns about their futures. Some who had transplants talked about their new kidney and how long it would last. Often people referred to stories in the media about the longest kidney transplant which gave them hope for their own. Parents with children who had Alport Syndrome worried about if and when their children might develop symptoms. Dee who was on dialysis for the first time said she was going to see a transplant coordinator to discuss a transplant in the future. Debra, Katie and Sarah said they didn’t worry too much about the future because they looked to other female members of their family who were well. Karen was still waiting for “the call” as she had been on the transplant list for 1 year and 9 months (since filming her interview, she has had a transplant). Deborah was looking forward to getting married this year and wanted to look into family planning after this. Donna wanted to eat healthily and exercise to help her kidney function. Michael Y said he wanted to travel and perhaps live abroad in the immediate future.


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