Alport Syndrome

Alport Syndrome - messages to others

We asked people what advice they would give to others who are living with Alport Syndrome. Everyone is different and what works for one person may not work for someone else. Here are some of their suggestions.

Many people wanted to get across that a having a full life is very possible with the right support. Maintaining a positive attitude, despite the challenges, was often seen as important as well as not giving up or letting Alport Syndrome “rule” their life. Kevin, who had been on dialysis and had a transplant, felt that Alport Syndrome is “not as bad as you think” and “life goes on”. Robin said it was important not to be ‘personified’ or defined by Alport Syndrome and to have other things to focus on such as work, hobbies/interests and family. Deborah’s advice was to “get out there and enjoy it whilst you can”.
People often advised others to keep going to doctors’ appointments, take medication, and look after themselves by having a healthy diet and lifestyle.
Getting good information was critical because it helped people deal with their condition (see also Alport Syndrome - getting information). Some, like Sarah and Katie, advised others to get as much information as possible and said “don’t be in the dark”, and Steve advised “be your own expert”. People like Kevin suggested being selective with gathering information from the internet and trusting the doctor.
Some people had specific advice for young people, mainly about not worrying too much and enjoying life as much as they could while they were healthy. Mary and Philip thought it was important for young people to get a good education, which would help them get a good job, and that any barriers to this (such as hearing loss) should be tackled. Robin felt it was essential to get decent hearing aids. Some people also thought that it was important to fight for support to be provided in schools and at work.
Alison and Debra said that many treatments were available and advances were happening in research which gave hope for the future. Robin and Alan said you could have a normal life after a transplant.
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Having a support network was seen as vital. People spoke about seeking support and information from others in a similar situation. Jago and Wilf said that people with Alport Syndrome are not alone and that there are others to talk to with the condition who would understand what they are going through.
Angela and Amanda said that they thought it was important to “press” their doctors for more information when necessary. Several people suggested writing questions down and taking these to their doctor, and advised others not to be afraid of asking the doctor questions (see Alport Syndrome - messages to healthcare professionals).

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