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 gMG.
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 spouse or a parent.
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 spouse or a parent.
Understanding the profound impact of being a primary caregiver on your mental health often takes time, and many people tend to only seek help when they’re already overwhelmed.1
Families living with rare diseases often endure years of uncertainty, confusion and despair from the initial onset of symptoms to when a final diagnosis is reached.2,3
Receiving a diagnosis signifies the start of a new chapter for most caregivers and this transition frequently happens without much preparation.3
Families living with rare diseases often endure years of uncertainty, confusion and despair from the initial onset of symptoms to when a final diagnosis is reached.2,3
Receiving a diagnosis signifies the start of a new chapter for most caregivers and this transition frequently happens without much preparation.3
Consequently, caregivers may experience initial challenges with their own mental wellbeing before they can fully adjust to their new circumstances.1
Many caregivers also find themselves balancing their caregiving responsibilities with work, studies or other family commitments.1 Trying to meet both personal and professional commitments can be overwhelming and stressful.
In addition to the awareness that your caregiving responsibilities may extend indefinitely, these emotions can also make you vulnerable to mental health issues.
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.3
Many caregivers also find themselves balancing their caregiving responsibilities with work, studies or other family commitments.1 Trying to meet both personal and professional commitments can be overwhelming and stressful.
In addition to the awareness that your caregiving responsibilities may extend indefinitely, these emotions can also make you vulnerable to mental health issues.
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.3
- Pelentsov, L. J., Laws, T. A., & Esterman, A. J. (2015). The supportive care needs of parents caring for a child with a rare disease: A scoping review. Disability and Health Journal, 8(4), 475-491.
- Genetic Alliance UK. Rare Experience 2020. The lived experiences of people affected by genetic, rare and undiagnosed conditions. Available at: https://geneticalliance.org.uk/wp-content/uploads/2024/02/Rare-Experience-2020-Report-updated-May-2021-.pdf.
- Spencer-Tansley R, Meade N, Ali F, Simpson A, Hunter A. Mental health care for rare disease in the UK - recommendations from a quantitative survey and multi-stakeholder workshop. BMC Health Serv Res. 2022 May14;22(1):648.
MENTAL HEALTH SUPPORT OPTIONS
A variety of support options exist for addressing mental health concerns. Some commonly used therapies are listed here. Psychotherapy involves...
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PHYSICAL RESPONSE TO STRESS
When your body experiences something really stressful or frightening it can respond with a “fight or flight” kind of reaction.1,2 The...
The information on this website is provided by Alexion, AstraZeneca Rare Disease for educational purposes only and is for people prescribed an Alexion medicine. It is not intended nor implied to be a substitute for professional medical advice. If you have any questions about your medical condition, please talk to your doctor or other health care provider.
Reporting of Side Effects
If you get any side effects, talk to your doctor, pharmacist or nurse. This includes any possible side effects not listed in the patient leaflet. You can also report side effects directly via the national reporting system [Country to add their Regulatory Authority website]. Side effects should also be reported to Alexion by contacting https://contactazmedical.astrazeneca.com. By reporting side effects, you can help provide information on the safety of this medicine.
Reporting of Side Effects
If you get any side effects, talk to your doctor, pharmacist or nurse. This includes any possible side effects not listed in the patient leaflet. You can also report side effects directly via the national reporting system [Country to add their Regulatory Authority website]. Side effects should also be reported to Alexion by contacting https://contactazmedical.astrazeneca.com. By reporting side effects, you can help provide information on the safety of this medicine.