Philip, Mary, and Karen

Anthony, Philip and Mary’s son, was the only one in his family to be diagnosed with Alport syndrome. Despite having a full life with Alport syndrome, the accumulation of work, health-related and personal distress contributed to him developing depression and eventually dying by suicide. Philip, Mary, and Karen feel that hospitals need to provide better mental health support.

Mary and Philip’s son Anthony had haematuria (blood in your urine) as an infant. At the age of 9 he was examined by a nephrologist, who discovered that Anthony was also developing hearing loss, which he suggested was linked to Anthony’s kidney condition. Mary and Philip are not sure whether Anthony was diagnosed with Alport syndrome specifically at that time because not much was known about the condition then. He was the only one in the family who had the condition. Therefore, his family felt simultaneously guilty and very protective of him.

Karen, Anthony’s sister, remembers how Anthony struggled in school because of his hearing: he was falling behind with his schoolwork, and his classmates sometimes teased him about his hearing aids. The teasing continued into his adult life, when Anthony started to work as a joiner. His physical, male-dominated work environment didn’t have structures in place to support people with disabilities, and the Equality Act wasn’t enforced then. Still, Karen believes that all the teasing that Anthony grew up with made him a stronger person in the end.

Anthony’s kidneys started declining when he was 16. He was on CAPD dialysis and received his transplant at the age of 19. Karen remembers Anthony struggling with the renal diet during his dialysis. But his appetite quickly returned after the operation, so the first place Karen took him after the hospital discharge was a fast food restaurant to have a burger, something he had been unable to eat for a very long time.

After the transplant, Anthony’s life normalised to a certain extent. His family feels that Anthony never dwelled on the “enormity of what he’d been through”; rather, “he kind of just got on with it” and never talked about it until much later. He continued with work, got married, and had two children.

Yet, Karen feels that Anthony was always “living his life on the edge”, as though he knew he would not live until old age. She thinks that part of it could have been an anxiety about his prospects of getting a second transplant if his kidneys failed again. She recalls how Anthony once told her that even with his transplant he never felt “totally well”, which made her realise the magnitude of living with a chronic disease. There were periods of time when Anthony felt constantly tired as he got older, and the family wonders whether that could have been a side effect of his medication.

Anthony’s work remained relentless for most of the time, and his family feel that this played a role in Anthony’s fatigue. His employer didn’t take his condition into consideration when they gave him physically taxing work. On the other hand, neither did Anthony want to do less, as a way of proving to himself that he was still capable. Furthermore, as the main provider for his wife and children, he also felt responsible for maintaining his family’s financial stability.

A crunch point in Anthony’s life came when he developed an eye problem related to Alport syndrome, and had to have an operation. The operation, which is usually completed without complications, was unsuccessful. The family feels that the surgeon wasn’t aware that Anthony had Alport syndrome, which is why the surgery failed. However, when Anthony made a complaint, the doctors brushed him off by telling him that he had known the risks. The possibility of losing his eyesight was a major distress for Anthony and he feared for not being able to drive anymore, and losing his job.

Just before this, he was also made redundant from his permanent role as a joiner at the Council contractors. The justification was that he took too much time off work; something that would not be allowed now, Karen says. Anthony took his employers to tribunal, but the case dragged on for three years before he received compensation. Throughout, he struggled to earn money, as it was also a time of recession. The lack of work and subsequent lack of routine made him very down, and lots of time to think made Anthony’s depression more severe.

He grew increasingly isolated from his friends and family. Unfortunately problems also arose in his marriage, compounding the problems he had already experienced. Anthony died by suicide on the 13th of February 2014.

Philip, Mary, and Karen agree that he was very unwell. They also feel that it was likely the accumulation of all the difficulties together that made Anthony desperate. What they concentrate on now is spending time with his children and making sure they have all the support they need.

His family would like to see more information and better mental health support for people living with Alport syndrome and their families, to make sure they get the emotional support when they need it particularly at stressful times in life. They also think that support should particularly focus on schools to make sure that children demonstrating early symptoms of Alport syndrome don’t fall behind in education.

Looking back, Philip, Mary, and Karen believe that Alport syndrome never stopped Anthony from having a full life: he had lots of happy times and experiences with his friends and family. He went on holidays, out with his friends, and also had lots of fun times in his life. His family feel that without the kindness of the family who donated the kidney Anthony may never have experienced the things he did, and they are grateful for the time they had with him.

Mary, Phillip and Karen feel it is important for people with Alport Syndrome to talk about how they’re feeling.

Karen, Philip and Mary felt things started to get on top of Anthony and he was under a lot of pressure.

Karen, Philip and Mary say how they felt with Anthony being the only person in their family with Alport Syndrome.

Mary, Philip and Karen say that Anthony’s job was very tiring physically and also that he was bullied by some work colleagues.

Mary, Phillip and Karen feel it was difficult for Anthony to go back to college, and so advise others to get a good education.

Philip, Mary, and Karen think that Anthony’s way of thinking changed after he had a transplant and was on medication.