Has a loved one been diagnosed?
Being told that someone you love has a long term progressive condition is going to concern you.
Everyone involved will need lots of support and access to the right information about how to manage the long term impact of this diagnosis. Having plenty of information and details of other groups and individuals who can provide further advice will help you support your love one in becoming ‘expert’ at managing their own condition.
For more information on any of the issues raised below, please contact us:
0800 652 6352 (freephone)
You may find it helpful to consider the following suggestions:
there will be various professionals involved in your loved one's diagnosis, treatment and future care. A range of issues will need to be considered, depending on the person's particular condition, and there will need to be a specialised package of care agreed to meet their needs.
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depending on whether the person affected is a child, spouse or partner, a family member, a work colleague or someone you are involved in the professional care of. Some people find it helpful to write a list of the things that concern them. You can then work through the list, finding out who the right person is to answer each concern and gathering information as you do so.
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may have symptoms themselves and be worried that they have inherited the same condition. If this is the case, they should explain their concerns to their doctor and ask for a referral to a local muscle centre for further testing. A specialst in genetics can help explain inheritance patterns- The Genetic Alliance UK holds a directory of local genetic clinics. Visit www.geneticalliance.org.uk or telephone 020 7704 3141 for details.
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See our About muscle-wasting conditions section for answers to general questions about musclular dystrophy and related neuromuscular conditions and our Care and Support section for further information on a range of literature and services available to support families affected by muscle-wasting conditions.
We also run sessions to help individuals feel more in control of their own condition - please see our Living with MD days page for further information.