Since many doctors are unfamiliar with the condition (because it is so rare), it is essential that people who have myotonic dystrophy are aware of the problems and complications they may face and share this information with their health professionals. Some of these are mentioned on pages 1 and 2. They do not always all occur, and many people have few symptoms, but it is still important to be aware of them.
Some specialist centres now recommend an active monitoring process of people with myotonic dystrophy type 1 so that the effects of the condition can be found and managed before they become a severe problem.
What are the risks with anesthetics?
Operations and anaesthetics can be risky, even for people mildly affected. It is very important that surgeons and anaesthetists know that a person has myotonic dystrophy before any surgery is planned. Problems only usually occur when doctors are unaware of the condition.
It is also helpful to carry a myotonic dystrophy alert card, and a care plan, both of which contain information to alert emergency and other healthcare professionals to the specific issues that affect people living with myotonic dystrophy. These are available for free from Muscular Dystrophy UK – call the freephone helpline on 0800 652 6352 or email firstname.lastname@example.org to order one.
Related health issues
Many people can develop heart problems, which are commonly treatable but can be serious if ignored. Speak to your neurologist or GP about having an annual electrocardiogram (ECG). This can be performed by a cardiologist.
Some people who have myotonic dystrophy may have more trouble with other body systems than they do with their muscles. For example, excessive daytime sleepiness, swallowing difficulties and a range of bowel symptoms may appear unrelated, but they may all be connected to myotonic dystrophy. They may be helped by specific drugs. It is important that people with myotonic dystrophy make sure that whoever treats them is aware they have the condition and knows the wide range of associated problems.
Things to think about during a pregnancy
Women with the condition need careful management if planning a pregnancy: not only is there a risk of a baby being severely affected, but sometimes serious problems during pregnancy and delivery may also affect the mother.
If a couple are concerned their baby may be affected it is possible to test a pregnancy. Your GP can refer you to your local clinical genetics department for more information and testing. Please see our genetic counselling and family planning factsheets for more information.
Will I need specialist equipment?
Equipment for mobility and adaptations in the house can be very useful. Weak neck muscles may require a head-rest when driving.
Download your alert card
Alert cards are conveniently shaped to fit inside a wallet and outline key recommendations and precautions that a non-specialist clinician would need to know during a time of worsening health.