Alport Syndrome

Alport Syndrome: getting information

The people we spoke to had different ideas and approaches to getting information about Alport Syndrome. Because Alport Syndrome affects different parts of the body, often people wanted information about what was affecting them at that time. People made choices about getting information based on what was available when they wanted it, and what felt right for them (see also: People’s attitude to Alport Syndrome and their outlook for the future). Whether they used the internet and social media, talked to family members or their hospital consultant, or whether they preferred finding out how others with the condition had coped, what mattered was that the information provided was reliable, up to date and right for them. In this way, many people used a ‘mix and match’ approach to getting information from a number of different sources.
As Alport Syndrome is rare in the general population, some people had found information was limited, particularly if they had a rarer form such as autosomal recessive (see Alport Syndrome - messages to others). Many people chose to look for specific information at different stages of their condition and used a combination of the internet and talking to their doctors. Certain events often prompted people to search for more information for example, after diagnosis or before starting dialysis. Some liked to check out their medication on the internet and find out about possible side effects. If people had a new or unexpected symptom, or when they wanted reassurance about an aspect of Alport Syndrome, they sometimes turned to their doctors or went online. Some people had used information from the Alport UK and US Alport Syndrome Foundation websites to help prepare them for what was to come, or to help them make a list of questions for their doctors. People also spoke about being the person in their family who sought out such information.
Many talked about the pros and cons of looking up ‘Alport Syndrome’ online. Some people found that some websites contained information which seemed very negative and worrying. Alison felt that information was sometimes conflicting. Michael Y said that the information online could be “very binary”. Alan worried that online information could be damaging.
Many people weighed up the positive and negative information they saw on the internet and took a very balanced and realistic approach. Generally people said that if you were careful about which websites you used, there was usually a lot of useful and helpful information available. Donna felt having access to other people online to compare notes with, was very helpful for her. Paul said that information on the internet could “send your mind flying” but at the same time he enjoyed helping others on social media sites and forums. A few people said that they checked the validity of a website and weighed up how trustworthy it was. Many people spoke about information on Alport Syndrome changing: Angela said that when she was originally diagnosed, the internet “was not as big as it is now”.
People had very different views about how much information they wanted to know about Alport Syndrome because the information could be difficult to live with, and most people wanted to enjoy the here and now and get on with life. People who hadn’t had a diagnosis until later in their life sometimes said they were pleased they hadn’t been told all the facts in advance. Donna said that sometimes “ignorance is bliss”. Some people wanted to seek out as much information as possible whilst others were more cautious and satisfied with smaller amounts of information. Most people said this was to do with their character and attitude and outlook. Amanda felt she was the sort of person that liked to know everything and have more knowledge. Michelle said she was very careful about seeking out further information about Alport Syndrome as she feared “bleak” and “horrible” stories, particularly on the internet.
Many people got information from hospital doctors and renal units about Alport Syndrome (see also Alport Syndrome - messages to others). Some said they felt their hospital doctor provided them with enough information so that they didn’t have to become, as Kevin put it, “an amateur sleuth”. Other people said that they were disappointed that GPs and other healthcare professionals didn’t know what Alport Syndrome was. People said they were impressed when a health care professional had taken the time to research it. A few people talked about their doctor not providing enough information at critical times. People also mentioned not being given the full picture about their condition. This often prompted them to find out more information online. Patient View was mentioned by some people as a good source of information because it helped people feel more in control of their condition (see Resources)
Many people sought to connect with others in a similar situation and went to charity information days as well as speaking to other family members. As Alport Syndrome is often hereditary people said they spoke to parents or other family members to get more information. People spoke about asking questions on forums or finding out information from others in a similar situation particularly if their doctor had dismissed something such as a side effect. Sometimes people went online when they didn’t want to talk to family members or friends. A few people said that they wanted to help others and were actively involved in raising awareness and taking part in online forums.

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