These new cards mean that people living with muscle-wasting conditions and their families will have the security of knowing they can easily inform emergency health care professionals of the vital and specific issues that affect children and adults with these conditions.
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. To make sure the cards are effective they cover a wide range of possible symptoms and situations. The card also includes important contact information on a person’s specialist neuromuscular and respiratory teams which will ensure expert advice will be much easier to access.
We currently have alert cards available for:
Duchenne muscular dystrophy
We have launched the Duchenne muscular dystrophy alert card. A wallet size alert card outlining key recommendations and precautions and including key contact information for the patient to the specialist neuromuscular centre during times of worsening health
“All patients with a known neuromuscular diagnosis should have a documented emergency plan which specifies a clear point of access for emergency care. This may include telephone access for the patient to the specialist neuromuscular centre during times of worsening health.”
(Unplanned Admissions of Neuromuscular Patients 2012)
You can view the information on the alert card in this PDF image of it.
Please order your alert card by emailing info@musculardystrophyuk.org or calling the Freephone helpline on 0800 652 6352.
Charcot-Marie-Tooth disease (CMT)
The CMT symptoms card is conveniently shaped to fit inside a wallet and outlines key information about symptoms as well as precautions that a non-specialist clinician would need to know about CMT. The card has been developed by a team made up of people living with CMT, leading neuromuscular specialists, the Bridging the Gap project and CMT UK to ensure that it is an effective information tool for people living with CMT and health professionals.
This card will mean that people living with CMT in the UK will now have the security of knowing they can easily inform people, including health care professionals, of the vital and specific issues that affect people with this neuromuscular condition.
You can view a PDF file of the symptoms card and the information within it.
Please order your symptoms card by emailing info@musculardystrophyuk.org or calling the Freephone helpline on 0800 652 6352.
Becker muscular dystrophy
We have launched a Becker muscular dystrophy alert card. The Becker card is a wallet-sized alert card outlining key recommendations and precautions and includes key contact information for the patient to the specialist neuromuscular centre during times of worsening health.
You can view a PDF file of the alert card and the information within it.
Please order your alert card by emailing info@musculardystrophyuk.org or calling the Freephone helpline on 0800 652 6352.
Limb girdle muscular dystrophy
The two cards will mean that people living with limb-girdle muscular dystrophy and their families will have the security of knowing they can easily inform emergency health care professionals of the vital and specific issues that affect children and adults with these conditions.
The limb-girdle muscular dystrophy 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. To make sure the cards are effective they cover a wide range of possible symptoms and situations. The card also includes important contact information on a person’s specialist neuromuscular and respiratory teams which will ensure expert advice will be much easier to access.
You can view PDFs of the types 1 card and types 2 card and the information within it.
Please order your alert card by emailing info@musculardystrophyuk.org or calling the Freephone helpline on 0800 652 6352.
Myotonic dystrophy types 1 and 2
We have launched alert cards for individuals and families affected by myotonic dystrophy types 1 and 2 . A wallet size alert card outlining key recommendations and precautions and including key contact information for the patient to the specialist neuromuscular centre during times of worsening health
You can view the information on the alert cards here:
Please order your alert card by emailing info@musculardystrophyuk.org or calling the Freephone helpline on 0800 652 6352.
Spinal muscular atrophy (SMA)
We have three alert cards available for people who have Spinal Muscular Atrophy types 1, 2 and 3. These cards will mean that families will have the security of knowing they can easily inform emergency health care professionals of the vital and specific issues that affect children and adults with SMA Type 1, 2 and 3.
The SMA 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.
You can view PDF files of the cards below:
Please order your alert cards by emailing info@musculardystrophyuk.org or calling the Freephone helpline on 0800 652 6352.
Congenital muscular dystrophy
The congenital muscular dystrophy alert card will mean that families will have the security of knowing they can easily inform emergency health care professionals of the vital and specific issues that affect children and adults with congenital muscular dystrophy.
The congenital muscular dystrophy alert card is conveniently shaped to fit inside a wallet and outlines key recommendations and precautions that a non-specialist clinician would need to know during a time of worsening health. To make sure the cards are effective they cover a wide range of possible symptoms and situations. If you are concerned about any of the issues included in the cards, your neuromuscular consultant or care advisor will be able to help.
You can view the information on the alert card in this PDF image of it.
Please order your alert card by emailing info@musculardystrophyuk.org or calling the Freephone helpline on 0800 652 6352.
Facioscapulohumeral muscular dystrophy (FSHD)
The facioscapulohumeral muscular dystrophy (FSHD) alert card will mean that families will have the security of knowing they can easily inform emergency health care professionals of the vital and specific issues that affect children and adults with FSHD.
The FSHD alert card is conveniently shaped to fit inside a wallet and outlines key recommendations and precautions that a non-specialist clinician would need to know during a time of worsening health. To make sure the cards are effective they cover a wide range of possible symptoms and situations. If you are concerned about any of the issues included in the cards, your neuromuscular consultant or care advisor will be able to help.
You can view the information on the alert card in this PDF image of it.
Undiagnosed muscle-wasting conditions
The undiagnosed muscle-wasting condition alert card will mean that families will have the security of knowing they can easily inform emergency health care professionals of the vital and specific issues that affect children and adults with an undiagnosed neuromuscular condition.
The undiagnosed muscle-wasting condition card is conveniently shaped to fit inside a wallet and outlines key recommendations and precautions that a non-specialist clinician would need to know during a time of worsening health. To make sure the cards are effective they cover a wide range of possible symptoms and situations. If you are concerned about any of the issues included in the cards, your neuromuscular consultant or care advisor will be able to help.
You can view the information on the alert card in this PDF image of it.
Please order your alert card by emailing info@musculardystrophyuk.org or calling the Freephone helpline on 0800 652 6352.
Oculopharyngeal muscular dystrophy (OPMD)
The oculopharyngeal muscular dystrophy (OPMD) symptoms card will mean that families will have the security of knowing they can easily inform emergency health care professionals of the vital and specific issues that affect adults with OPMD.
The OPMD card is conveniently shaped to fit inside a wallet and outlines key recommendations and precautions that a non-specialist clinician would need to know during a time of worsening health. To make sure the cards are effective they cover a wide range of possible symptoms and situations. If you are concerned about any of the issues included in the cards, your neuromuscular consultant or care advisor will be able to help.
You can view the information on the alert card in this PDF image of it.
Please order your card by emailing info@musculardystrophyuk.org or calling the Freephone helpline on 0800 652 6352.
Inclusion body myositis (IBM)
The inclusion body myositis (IBM) symptoms card will mean that families will have the security of knowing they can easily inform emergency health care professionals of the vital and specific issues that affect adults with IBM.
The IBM card is conveniently shaped to fit inside a wallet and outlines key recommendations and precautions that a non-specialist clinician would need to know during a time of worsening health. To make sure the cards are effective they cover a wide range of possible symptoms and situations. If you are concerned about any of the issues included in the cards, your neuromuscular consultant or care advisor will be able to help.
You can view the information on the alert card in this PDF image of it.
Please order your card by emailing info@musculardystrophyuk.org or calling the Freephone helpline on 0800 652 6352.
GNE myopathy
The GNE myopathy information card will mean that families will have the security of knowing they can easily inform emergency health care professionals of the vital and specific issues that affect people with GNE myopathy.
The GNE myopathy card is conveniently shaped to fit inside a wallet and outlines key recommendations and precautions that a non-specialist clinician would need to know during a time of worsening health. To make sure the cards are effective they cover a wide range of possible symptoms and situations. If you are concerned about any of the issues included in the cards, your neuromuscular consultant or care advisor will be able to help.
You can view the information on the alert card in this PDF image of it.
Please order your card by emailing info@musculardystrophyuk.org or calling the Freephone helpline on 0800 652 6352.