Advocacy & support

People with rare diseases face particular challenges in terms of delays to diagnosis, and a lack of awareness and medical research on their disease. It is common to want to seek out additional information and support not just from healthcare professionals, however because NDM is a rare disease, you might not know anyone else who has it.

Support groups and patient advisory groups connect people with the same rare disease to share experiences. Patient advocacy groups (PAGs) are organisations usually run by patients to support the needs of other patients, including campaigning for scientific research or raising awareness of the disease.

Ask your doctor to refer you to a group or PAG that supports the NDM community.

UK-NDM-2405-00002 May 2024

Foods to avoid on a low-potassium diet*

Fruit^1,2
Vegetables^1,2
Beans/legumes^1,3
Other^1-3

Avocado
Artichoke
Baked beans
Bran cereal

Apricots
Beetroot
Kidney beans
Dairy (eg yoghurt, milk)^†

Bananas
Brussel sprouts
Lentils
Nuts

Dried fruits eg dates, raisins and prunes
Broccoli (cooked)
Brown rice

Grapefruit
Okra
Salt substitutes

Kiwi
Parsnip
Wholewheat bread and pasta

Mango
Potatoes (processed or with skin on)

Melons
Cooked spinach

Nectarines
Tomato (concentrated, eg. Tomato puree)

Oranges and orange juice

Papaya

Pomegranate and pomegranate juice

Fruit^1,2

Avocado

Apricots

Bananas

Dried fruits eg dates, raisins and prunes

Grapefruit

Kiwi

Mango

Melons

Nectarines

Oranges and orange juice

Papaya

Pomegranate and pomegranate juice
Vegetables^1,2

Artichoke

Beetroot

Brussel sprouts

Broccoli (cooked)

Okra

Parsnip

Potatoes (processed or with skin on)

Cooked spinach

Tomato (concentrated, eg. Tomato puree)
Beans/legumes^1,3

Baked beans

Kidney beans

Lentils
Other^1-3

Bran cereal

Dairy (eg yoghurt, milk)^†

Nuts

Brown rice

Salt substitutes

Wholewheat bread and pasta

*Meat and fish contain a moderate amount of potassium but they are an important source of protein so shouldn’t be avoided; ^†Dairy products contain potassium but are an important source of calcium so should be consumed in moderation

References

WebMD. Low-potassium diet: what to know? Available at: https://www.webmd.com/food-recipes/low-potassium-diet-foods ; Accessed February 2022
St Georges Kidney Patients Association. Eating on a low potassium diet. Available at: https://www.sgkpa.org.uk/main/eating-well-on-a-low-potassium-diet-2 ; Accessed February 2022
NHS. Information for people on a low potassium diet. Available at: https://www.nth.nhs.uk/content/uploads/2019/02/PIL1061-Information-for-people-following-a-low-potassium-diet-Final-11.02.19-LP.pdf ; Accessed February 2022

NDM type¹
Symptoms^2,3
Which type of ion channel? ^2,3
How is it inherited?^2,3

Thomsen myotonia congenita
(also called Thomsen myotonia or autosomal dominant myotonia congenita)
Lower limbs tend to be more affected, although can also affect the arms, hands and face. Stiffness may be worse when you first try to move after a period of inactivity, and may ease as you ‘warm up’.
Chloride (Cl-)
Autosomal dominant

Becker myotonia congenita
(also called Becker myotonia, Becker disease, generalized myotonia, recessive generalized myotonia or autosomal recessive myotonia congenita
Lower limbs tend to be more affected, although can also affect the arms, hands and face. Stiffness may be worse when you first try to move after a period of inactivity, or if you are startled, and may ease as you ‘warm up’. Sometimes people with Becker myotonia congenita experience temporary weakness after an episode of myotonia.
Chloride (Cl-)
Autosomal recessive

Paramyotonia congenita
(Also called Eulenburg disease, paralysis periodica paramyotonia, paramyotonia congenita of von Eulenburg, PMC or von Eulenburg’s disease)
Myotonia mainly affects hands and face and gets worse with exercise. Cold is also a key trigger of myotonia, and muscle weakness after an episode of myotonia may last hours or sometimes days.
Sodium (Na+)
Autosomal dominant

Sodium channel myotonia, SCM:
myotonia permanens and myotonia fluctuans, acetazolamide-responsive myotonia (ARM) previously known as Potassium aggravated myotonias (PAM)
Potassium-aggravated myotonia is a rare form of NDM that affects all areas of the body. Myotonia attacks are triggered by eating potassium-rich foods. Symptoms may fluctuate widely from day to day (myotonia fluctuans) or are constant and severe (myotonia permanens).
Sodium (Na+)
Autosomal dominant

Other closely related sodium disorders with myotonia
(including hyperkalemic paralysis or hyperPP)
Myotonia is usually mild, and often involves the eyelids, hands, and tongue. Attacks of weakness can occur at any time and are commonly triggered by rest following exercise, fasting, eating potassium-rich foods or stress.
Sodium (Na+)
Autosomal dominant

References

Stunnenberg B. Muscle Nerve. 2020 Oct; 62(4): 430–444
Hahn C, Salajegheh MK. Iran J Neurol 2016;15:46–53
Matthews E, et al. Brain 2010:133; 9–22

NDM type¹

Thomsen myotonia congenita

(also called Thomsen myotonia or autosomal dominant myotonia congenita)

Becker myotonia congenita

(also called Becker myotonia, Becker disease, generalized myotonia, recessive generalized myotonia or autosomal recessive myotonia congenita

Paramyotonia congenita

(Also called Eulenburg disease, paralysis periodica paramyotonia, paramyotonia congenita of von Eulenburg, PMC or von Eulenburg’s disease)

Sodium channel myotonia, SCM:

myotonia permanens and myotonia fluctuans, acetazolamide-responsive myotonia (ARM) previously known as Potassium aggravated myotonias (PAM)

Other closely related sodium disorders with myotonia

(including hyperkalemic paralysis or hyperPP)
Symptoms^2,3

Lower limbs tend to be more affected, although can also affect the arms, hands and face. Stiffness may be worse when you first try to move after a period of inactivity, and may ease as you ‘warm up’.

Lower limbs tend to be more affected, although can also affect the arms, hands and face. Stiffness may be worse when you first try to move after a period of inactivity, or if you are startled, and may ease as you ‘warm up’. Sometimes people with Becker myotonia congenita experience temporary weakness after an episode of myotonia.

Myotonia mainly affects hands and face and gets worse with exercise. Cold is also a key trigger of myotonia, and muscle weakness after an episode of myotonia may last hours or sometimes days.

Potassium-aggravated myotonia is a rare form of NDM that affects all areas of the body. Myotonia attacks are triggered by eating potassium-rich foods. Symptoms may fluctuate widely from day to day (myotonia fluctuans) or are constant and severe (myotonia permanens).

Myotonia is usually mild, and often involves the eyelids, hands, and tongue. Attacks of weakness can occur at any time and are commonly triggered by rest following exercise, fasting, eating potassium-rich foods or stress.
Which type of ion channel? ^2,3

Chloride (Cl-)

Chloride (Cl-)

Sodium (Na+)

Sodium (Na+)

Sodium (Na+)
How is it inherited?^2,3

Autosomal dominant

Autosomal recessive

Autosomal dominant

Autosomal dominant

Autosomal dominant

References

Stunnenberg B. Muscle Nerve. 2020 Oct; 62(4): 430–444
Hahn C, Salajegheh MK. Iran J Neurol 2016;15:46–53
Matthews E, et al. Brain 2010:133; 9–22