Mental health – aHUS Agenda Topic 12

Mental health is an extensive issue of modern times focusing on depression and anxieties. The inverse of depression is self-esteem how a person views and thinks about themselves. This is what aHUS patients asked:

Does the anxiety and self-esteem of aHUS patients vary significantly between treatment types and what can be done to reduce and boost them respectively?

Our expert told us:

“The anxiety and self-esteem of atypical hemolytic uremic syndrome (aHUS) patients can vary among individuals and may be influenced by treatment types, among other factors. Here are some considerations regarding anxiety and self-esteem in aHUS patients and how to address them:

Variation in Anxiety and Self-Esteem:

  1. Treatment Types: The choice of treatment, such as complement inhibitors or other therapies such dialysis , may impact anxiety and self-esteem. Some individuals may experience treatment-related anxiety or concerns about side effects, while others may feel more secure with effective treatment.
  2. Individual Differences: Anxiety and self-esteem can vary based on an individual’s personality, coping mechanisms, and previous experiences with aHUS and its treatment.
  3. Psychosocial Support: The availability of psychosocial support, including counseling or support groups, can significantly influence how patients manage anxiety and self-esteem.

Reducing Anxiety:

  1. Education: Providing patients with comprehensive information about their condition, treatment options, and potential side effects can reduce anxiety by increasing understanding and control.
  2. Psychosocial Support: Access to mental health professionals and support groups can help patients manage anxiety and develop coping strategies.

Boosting Self-Esteem:

  1. Positive Reinforcement: Encouraging patients to focus on their strengths, achievements, and resilience can boost self-esteem.
  2. Social Support: Support from family, friends, and healthcare providers can positively impact self-esteem by providing a sense of belonging and validation.
  3. Setting Achievable Goals: Setting and achieving manageable goals can enhance self-esteem and a sense of accomplishment.

It’s important to recognize that addressing anxiety and self-esteem concerns in aHUS patients is a multifaceted process. A comprehensive approach that includes education, psychosocial support, and a focus on individual needs and strengths can contribute to improved well-being. Patients should feel empowered to discuss these issues with their healthcare team, as addressing emotional and psychological aspects is an integral part of aHUS care.”

Every one in the general population has issues of anxiety or low self esteem at some point in the lives. They are human traits which become problematical with chronicity or a lack of reason for being so.

This question was about specific reasons I.e. from aHUS treatments. These basically fall into those aHUS patients on complement inhibitors and those needing chronic renal replacement therapies such as kidney transplant or dialysis.

aHUS dialysis patients could be on two different dialysis modes , haemodialysis ( HD) or continuous peritoneal ambulatory dialysis (CAPD). Haemodialysis can be undertaken in a hospital unit or can be performed by patients themselves at home.

Those aHUS patients rapidly accessing complement inhibitors should feel less anxiety and more self esteem than those who did not and live with renal replacement therapy.

However although the latter is a much higher burden of treatment to cope with and end stage kidney failure and its treatment can shorten lives, which justifies any anxiety, those facing treatment at two week or eight week intervals can see that as a burden too compared with the life they had before aHUS. So it is relative.

As the expert points out a loss of control over their lives contributes to these feelings.Recognising them as rational health outcomes from what has happened is the starting point from which to do something about them. Whilst having aHUS is a common denominator, patients fit into a spectrum and there will be patients reliant on dialysis who will have more control over their lives , maybe running a multi national company and overcome these health issues than some who been successfully treated.with complement inhibitors. Equally there will be some at the other end of the spectrum feeling too debilitated by what happened to do more.

In general, however , there is little to dispute that these issues vary between different treatments different aHUS patients receive and that there are things that can be done to reduce anxiety and boost self esteem in surviving aHUS patients.

Article No. 635

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