aHUS who cares?

Another aHUS Awareness Day passes with an increase in participation by the aHUS community.

At the time of writing the aHUS alliance 2018 aHUS Awareness Day video on our global Atypical HUS Patient Voice YouTube channel is approaching 600 views – spreading even more awareness.

The subject of the video is about aHUS patients recognising those who support and care for them. It is as important facet of coping with any chronic illness. Depression or lack of self esteem as a result of being “different” or having been face to face with own mortality is understandable outcome  for anyone even if there is a treatment that can save a life. Things certainly look different after an encounter with aHUS.

Adjusting to regain normality and even laughing  again is common theme throughout the individual contributions to the video. Gaining that and getting some life balance back to turn negative into positive depends also on sources of support.

The extent to which patients in the video could recognise those who support and care about them was restricted by the size of the dialogue box used in each frame of the video. Nevertheless an extensive list of those who matter to patients emerged.

Nurses were most frequently mentioned (22  times) as a source of support. There is a sense that some go beyond the mere routine delivery of treatment (whether infusions or dialysis)  and a friendly relationship develops. Along with Doctors (15 mentions)  care providers,  sometimes over a lifetime in the case of young patients , can make treatment sessions a time for fun,  laughter and reassurance for the patient and family.

Family being another key source (mothers, fathers and both parents getting 16 mentions) for youngsters and young adults. Their unconditional presence and provision of “logistics “ help not only make things better but bring about some normality again.

For aHUS patients who are themselves parents their children (10 mentions) give the sense of joy and motivation to carry on.

Other family members (sisters ,brothers, grandparents) are also a source of comfort just by “being there” when things get tough and are mentioned 21 times altogether.

There were 8 mentions of toys and pets making hospital visits and clinical procedures easier and less anxious.

Friends get 9 mentions for their understanding and acceptance and helping normality return. There was one reference to other aHUS patients helping  and even a couple of patient advocates were included as friends but generally patient organisations are not seen in that way, certainly not those which have become a business.

On a global level Jeff, who facilitated the aHUS Awareness Day 2018 video, and Linda, who works with resource creation and aHUS social media, and similarly Francisco and Mireya, although less global, bring support to Spanish speaking countries,  do so in friendship. They do so to make people feel better.

The aHUS Alliance continued its tradition as a leader in creating original content for all nations and throughout the atypical space, such as the aHUS Awareness Day release of the 2 new editions of 2018 aHUS Fact sheets.

As this blog was being written the message below arrived from Kamal who was reacting to the news that a pharmaceutical company was abandoning a trial of a Complement inhibitor for the treatment of aHUS. Kamal and others like him in India cannot access eculizumab but hope, with a realism, for alternatives and trials. He was thanking fellow advocates for thinking about him.

“I am honestly not disappointed. I am pretty used to this by now. I am resigned to a life on dialysis. I don’t expect any complement inhibitor to become available in India any time soon. And I don’t say this with sarcasm or despondency. I am just being practical. There’s no point in getting my hopes high and then be disappointed. If anything does materialise, great! If not, I am doing pretty well. Thanks.”

The aHUS Awareness Day 2018 has shown how others make a difference to those with aHUS, it is well worth knowing.