Your experiences can help shape care guidelines for all mitochondrial patients
Lily have been invited to take part in an international mitochondrial workshop taking place in February 2019 which aims to help improve care guidelines for those affected by mitochondrial disease.
As part of this workshop, we have been asked to represent the MELAS patients we support and to gather patient experiences of MELAS and stroke-like episodes.
If you are a UK patient, or carer/family member who has experience of stroke-like episodes, we would be grateful if you could please provide your experience of living with MELAS and stroke-like episodes or alternatively, answer the questions below.
Stroke-like Episode Questions
1. In general, do you or your carer feel well-informed about recognising stroke-like episodes?
2. What is your source of information for the management of stroke-like episodes? (personal experience, published literature, written protocol, taught by clinician, other)
3. In general, do you feel your community team (general practitioners/primary care physicians) are well-informed about stroke-like episodes in mitochondrial disease?
4. In general, do you feel your neurologists at local hospitals are well informed about stroke-like episodes in mitochondrial disease?
5. Please list the main symptoms you experience when suffering a stroke-like episode due to underlying mitochondrial disease: neurological symptoms, headache, nausea/vomiting, altered conscious level, focal motor seizures, generalisd seizures, non-convulsive status epilepticus, elementary visual hallucination (eg. coloured flashing lights), formed complex hallucinations, visual field problems, muscle weakness, sensory symptoms, speech problems, apraxia, neuropsychiatric symptoms (eg. agitated/behavioral disturbances), lactic acidosis, other (please specify).
6. Do do you think all patients (or their carers) with mitochondrial disease and previous history of stroke-like episodes should be given an alert card and emergency care plan regarding the recognition and management of stroke-like episodes and associated complications?
7. If admitted to hospital with suspected stroke-like episode, do you feel confident your doctors understand stroke-like episodes and can offer appropriate treatment?
8. If admitted to hospital with suspected stroke-like episode, what treatments have you been offered? (anti epileptic drugs, L-arginine, dichloroacetate, ubiquinone, riboflavin, creatine, other?)
9. After you have been discharged from hospital do you feel you receive appropriate rehabilitation and support in the community?
10. As a result of your stroke-like episodes have you faced difficulties with any of the following: unemployment/drop out of education, cognitive impairment, social isolation, financial hardship, dependence of daily living activities, caregiver burden of other family members, depression, other?
If there is any other information you would like to share about living with MELAS or how stroke-like episodes affect you, or a person you care for, please include it here.
We suggest that you copy the questions above into an email, and reply under each question/delete options as applicable.
Please send all replies to [email protected] by Wednesday 21st February 2019. Anything you share will be treated confidentially within the meeting with all identifying data removed.
Thank you for your support. Your involvement will help shape the care that all mitochondrial patients with stroke-like episodes will receive in the future.