Living with aHUS
Living with aHUS can be challenging for the person with the condition and their caregivers. Learning about aHUS and how it affects the body is an important step towards managing the condition and to better understanding of the treatment.
Here, we’ll talk you through the things you may encounter when living with aHUS or caring for someone with the condition.
Wherever you are in the world, you’re not alone. There are groups out there offering help and information to anyone dealing with aHUS, whether you’re someone who’s living with aHUS or a family member or caregiver.
Some useful websites are aHUS Alliance Global Action, National Organization for Rare Disorders (NORD) and EURORDIS.
It’s also important to understand that the impact of aHUS may not always be visible to others.
Many people living with rare diseases such as aHUS experience anxiety as well as a sense of exhaustion as a direct consequence of their condition.5
Many people living with rare diseases such as aHUS experience anxiety as well as a sense of exhaustion as a direct consequence of their condition.5
Learning about aHUS can help you understand the challenges someone living with aHUS is faced with and can put you in a better position to be able to provide the best possible care.
For many people, adapting to life with aHUS is an ongoing journey rather than a singular event. It may sometimes fall into the background, only to resurface during different transitions, such as receiving a diagnosis, or initiating treatment.6
A study found that aHUS patients were still experiencing anxiety, depression and post-traumatic stress disorder (PTSD) to varying degrees, up to 6 years after being initially hospitalised.7
Patients with PTSD symptoms reported greater weight gain, poorer physical and emotional wellbeing and more anxiety and depression symptoms compared to patients without PTSD symptoms.7 It’s important to note that people react to the experience of trauma in a variety of ways.8 The majority of people exposed to trauma do not develop long-term PTSD.8,9
It’s good to know that while there are many different options to address dealing with mental health, there is no one-size-fits-all approach. Each approach has the potential to provide valuable insights and solutions for individuals confronting mental health challenges within the context of living with a rare disease like aHUS.
Your mental health journey is unique and so is the support you need.
When your body experiences something really stressful or frightening it can respond with a “fight or flight” kind of reaction.15,16 The physical response of the body to perceived threat involves the activation of the body’s stress response system.16
However, if these reactions remain long term after the event, it may be a sign of PTSD, where the body’s stress response is out of balance.15,16 While our understanding of the neurobiology of PTSD is still evolving, some key neurobiological features have been associated with PTSD.16
Here’s what happens in simpler terms:15,20- Heart racing
- Breathing faster
- Muscle tensing up
- Eyes widening
- Sweating
It’s good to know that while there are many different options to address dealing with mental health, there is no one-size-fits-all approach. Each approach has the potential to provide valuable insights and solutions for individuals confronting mental health challenges within the context of living with a rare disease like aHUS.
Your mental health journey is unique and so is the support you need.
A variety of support options exist for addressing mental health concerns. Some commonly used therapies are listed here.
- Psychotherapy
- Psychoeducation
- Family therapy
- Mindfulness
- Self-care
- Support groups
- Medication
These examples are intended for general information purposes only and are not intended as specific medical advice or recommendations from Alexion.
Complementary therapies can play a supportive role in addressing the holistic wellbeing of individuals. Here are some complementary therapies to consider.
- Yoga
- Art Therapy
If you are considering incorporating complementary therapies like those mentioned above, you should speak openly with your healthcare team to ensure a coordinated and integrated approach to your care.
It’s good to know that while there are many different options to address dealing with mental health, there is no one-size-fits-all approach. Each approach has the potential to provide valuable insights and solutions for individuals confronting mental health challenges within the context of living with a rare disease like aHUS.
Your mental health journey is unique and so is the support you need.
A caregiver is anyone, including a parent, grandparent or child who is caring for a family member, partner or friend affected by a rare disease, like aHUS. Many people may not initially self-identify as a caregiver as this role does not come with a formal label. This is particularly true when caring for a child, a spouse or a parent.
Receiving a diagnosis signifies the start of a new chapter for both patients and or caregivers and this transition frequently happens without much preparation.5 Consequently, caregivers may experience initial challenges with their own mental wellbeing before they can fully adjust to their new circumstances.10
Many caregivers also find themselves balancing their caregiving responsibilities with work, studies or other family commitments.10 Trying to meet both personal and professional commitments can be overwhelming and stressful. In addition, the realisation that your caregiving responsibilities may extend indefinitely can be overwhelming. As a caregiver, you may find yourself in a challenging position and often little or no consideration is given to how the significant changes in your life might be affecting you.5
- Emotional stress
Witnessing a loved one’s health struggles can be emotionally taxing.11 Caregiving often involves a high degree of unpredictability and can generate secondary stress in areas like work and family relationships.11 - Constant concern
The constant concern for the wellbeing of a partner can lead to chronic stress.11 Worrying about the health and future of a loved one can result in persistent anxiety.12 - Social isolation
The demands of caregiving may limit the opportunity for social interactions, as a result, spouses may feel socially isolated and disconnected from their support network.12 - Financial stress
The costs associated with medical care and treatment of a rare disease like aHUS can lead to financial stress.13 Navigating insurance, managing medical bills and handling the expenses of care can be a source of anxiety. - Guilt and self-critisism
Caregivers often experience guilt or self-criticism, believing they should be doing more or handling the situation better.14 These negative self-perceptions can further impact mental health. - Physical and emotional exhaustion
The combination of the emotional and physical demands of caregiving can lead to a neglect of personal wellbeing and other areas of life.14
- Empower yourself as a caregiver
Make it a priority to stay well-informed about aHUS and the treatment options available. Acquiring knowledge can be a powerful tool in easing the anxiety or fear you may be experiencing. - Develop a routine
As a caregiver, developing a routine can bring a sense of normalcy to your life. Predictability can offer comfort, benefiting both you and your partner. - Talk openly
Try to encourage an environment where you can talk openly and honestly about the struggles you are both facing. Encourage each other to express how you’re feeling, share concerns and voice any fears you may have. - Embrace joy
Remember, caring for someone with aHUS doesn’t mean they have to stop enjoying the things they love. Seek out ways to integrate activities and hobbies that bring joy into their lives. - Set realistic goals
Acknowledge the challenges of caregiving and set achievable goals. Acknowledge that mood and energy fluctuations aren’t limited to your partner, everyone experiences them, you included. - Future planning
Talk to your spouse about future plans and goals, addressing healthcare decisions, financial planning and practical considerations.
Keep in mind that everyone’s experience is different and that these recommendations should be tailored to your specific needs.
- Emotional stress
The emotional burden of witnessing your child’s health struggles can be overwhelming.13 You may experience feelings of anxiety, sadness, fear and helplessness as you navigate the uncertainties and complexities of aHUS.10 - Constant vigilance
Caregiving for a child with a health condition often requires constant vigilance.11 You may need to monitor their symptoms, administer medications and ensure they adhere to a treatment schedule. This continuous responsibility can be mentally exhausting. - Social isolation
The need to provide continuous care to your child may limit your ability to engage in social activities or spend time with friends and family.17 This social isolation can contribute to feelings of loneliness and detachment from your support network.17,18 - Impact on family dynamics
Caring for a child with aHUS can affect family dynamics.17 It may alter the roles and relationships within the family, leading to tensions or conflicts, which can add to your emotional stress. - Guilt and self-critisism
Many caregivers experience guilt or self-criticism, thinking they should be doing more or handling the situation better.10 These negative self-perceptions can further impact your mental health. - Caregiver burnout
Caring for a child with a chronic condition places you at risk of caregiver burnout.19 The stress and responsibilities can accumulate, leading to physical and emotional exhaustion, a decreased ability to cope, and an overall decline in mental wellbeing.
- Empower yourself as a parent caregiver
Make it a priority to stay well-informed about aHUS and the treatment options available. Acquiring knowledge can be a powerful tool in easing the anxiety or fear you may be experiencing. - Develop a routine
Developing a routine can bring a sense of normalcy to your life. Predictability can offer comfort, benefiting both you and your child. - Talk openly
Try to encourage an environment where your child can talk openly and honestly about the struggles they are facing. Encourage your child to express how they're feeling, share concerns and voice any fears they may have. - Encourage hobbies
Encourage your child to engage in hobbies or interests they love. This can contribute positively to their overall wellbeing, promoting a full and positive lifestyle. - Set realistic goals
Acknowledge the challenges of caregiving and establish achievable goals. Recognise that as your child gets older, changes in their mood and energy may occur beyond your control. - Future planning
Empowering your child with knowledge about their aHUS is essential to foster a sense of control as they grow older. Share information about their condition, treatment and the importance of self-care.
Keep in mind that everyone’s experience is different and that these recommendations should be tailored to your child’s specific needs.
aHUS, atypical haemolytic uremic syndrome; TMA, thrombotic microangiopathy; PTSD: Posttraumatic stress disorder