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The medical and administrative words you will come across on the site and along your care pathway, explained simply.
A
- AAH
- French allowance for disabled adults: a minimum income paid under certain conditions, after an MDPH decision. Learn more
- ALD
- Long-term condition (French scheme): cover at 100% of the French Health Insurance rate (excluding excess fees) for care related to a serious, lasting illness, at the doctor’s request. Learn more
- Algologist
- Doctor specialising in chronic pain, often working in a dedicated pain clinic.
- Antihistamine
- Medicine that blocks the effects of histamine, used in allergies and MCAS. Learn more
B
- Beighton score
- A short 9-point test measuring the flexibility of several joints. It is part of the diagnosis of hypermobile EDS. Learn more
C
- CCMR
- Rare disease competence centre: a local specialist service, linked to a reference centre. Learn more
- CDAPH
- Committee for the rights and autonomy of disabled people: it decides on applications submitted to the MDPH. Learn more
- CMI
- Mobility inclusion card: a card issued by the MDPH (priority, parking or disability mentions). Learn more
- ONS
- Oral nutritional supplements: very nourishing drinks or creams, prescribed when food alone is not enough. Learn more
- Coelioscopy (laparoscopy)
- Procedure under anaesthesia to look inside the abdomen with a camera, through small incisions. Learn more
- Collagen
- The main protein of connective tissue. Several types of EDS are linked to a fault in a collagen gene. Learn more
- CRMR
- Rare disease reference centre: an expert service that coordinates care, research and training for a rare disease. Learn more
D
- Denutrition (malnutrition)
- Lack of energy and protein intake, with loss of weight and muscle. It can be prevented and treated. Learn more
- Dysautonomia
- Malfunction of the autonomic nervous system, which controls heart rate, blood pressure, digestion and temperature. Learn more
- Dysmenorrhoea
- Painful periods. Learn more
- Dysmotility
- Slowed or disorganised contractions of the digestive tract, with no blockage. Learn more
E
- Ecchymosis
- A bruise: a small bleed under the skin after a knock.
- Endoscopy
- Test that explores the inside of the digestive tract with a flexible tube fitted with a camera.
- Enteral (nutrition)
- Liquid nutrition given directly into the digestive tract through a tube. Learn more
- ETP
- Therapeutic patient education: programmes to better understand your illness and organise daily life. Learn more
F
- Filière (rare disease network)
- French national network bringing together the expert centres for a group of rare diseases (OSCAR for non-vascular EDS, FIMATHO for certain digestive diseases).
G
- G-POEM
- Endoscopic procedure that relaxes the pylorus to help the stomach empty. Learn more
- Gastrostomy
- A tube through the abdominal wall into the stomach, used for feeding or to empty the stomach. Learn more
H
- hEDS
- Hypermobile EDS, the most common type of EDS. Its diagnosis relies on clinical criteria, without a genetic test. Learn more
- Hypermobility
- Joints that are more flexible than normal. It is not always a problem, but can cause pain and instability. Learn more
- Hypotension, orthostatic
- A sharp drop in blood pressure on standing up, which can cause dizziness or fainting. Learn more
I
- Idiopathic
- Whose cause has not been found.
J
- Jejunostomy
- A tube through the abdominal wall into the jejunum (part of the small intestine), for feeding while bypassing the stomach. Learn more
L
- Luxation (dislocation)
- Complete dislocation of a joint. When it is partial, it is called a subluxation.
M
- Manometry
- Test that measures the strength and coordination of contractions in part of the digestive tract. Learn more
- Mast cell
- Immune system cell that releases substances such as histamine during allergic reactions. Learn more
- MDPH
- Maison départementale des personnes handicapées: the French local one-stop shop for disability support and recognition. Learn more
- MPR
- Physical and rehabilitation medicine: the specialty covering rehabilitation, orthoses and independence. Learn more
O
- Orthosis
- A device (splint, knee brace, insole…) that supports or relieves a joint. Learn more
P
- PAI / PPS
- At school in France: an individual reception plan (for an illness) and a personalised schooling plan (via the MDPH). Learn more
- Parenteral (nutrition)
- Nutrition given directly into the bloodstream, through a drip into a vein. Learn more
- PNDS
- National diagnosis and care protocol: the French National Authority for Health’s reference document on managing a rare disease. Learn more
- POTS
- Postural orthostatic tachycardia syndrome: the heart speeds up sharply when standing. A form of dysautonomia. Learn more
- Proprioception
- The sense of where your body and joints are, without looking at them. It is often less precise in EDS. Learn more
- Pylorus
- Ring-shaped muscle at the stomach outlet that lets food pass into the intestine. Learn more
R
- RQTH
- Recognition as a disabled worker (French scheme): it makes it easier to adapt your job and access employment support. Learn more
S
- MCAS
- Mast cell activation syndrome (MCAS): mast cells release too many mediators, causing flare-ups that affect several organs. Learn more
- Early satiety
- Feeling full very quickly, sometimes after a few mouthfuls. Learn more
- Scintigraphy, gastric emptying
- The reference test for gastroparesis: a meal containing a tracer is followed for several hours. Learn more
- EDS
- Ehlers-Danlos syndromes (EDS): a group of 13 inherited connective tissue disorders. Learn more
T
- Tilt test
- Test on a tilting table to study heart rate and blood pressure when upright. Learn more
- Tissue, connective
- Supporting tissue found throughout the body: skin, joints, blood vessels, organs. Learn more
- TND
- Neurodevelopmental disorders (French abbreviation), such as autism or ADHD. Learn more
- Tryptase
- Substance released by mast cells, measured in the blood to diagnose MCAS. Learn more
- TSH (HSD)
- Hypermobility spectrum disorders (TSH in French, HSD in English): hypermobility that causes suffering without meeting all the criteria for hypermobile EDS. Learn more
V
- Gastric emptying
- The passage of stomach contents into the intestine after a meal. Learn more
Missing a word?
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