FSHD Brochure_

Physiotherapy
for Muscular
Diseases
Physiotherapy involving FSHD
This is an adapted English version of the original Dutch brochure issued by Spierziekten Nederland,
used with their permission.
This English version is issued by Muscular Dystrophy Foundation of South Africa.
Translater: George Landsberg
Editor: Keith Richmond
Design and Layout: Divan Joubert
Spierziekten Nederland. 2017. Fysiotherapie bij FSHD. Issue no. F007, June 2017. Baarn, NL.

PHYSIOTHERAPY
INVOLVING FSHD
CONTENTS
1 Introduction 3
2 Clinical Description 3
Background information 4
3 Physiotherapeutic Diagnosis 5
Medical history 5
Pathology specific functional disorders 5
Research and measuring instruments 6
4 Treatment 7
The role of the physiotherapist
5 Organisation of Care 9
Appendix 1: Summary 11
Appendix 2: ICF model 12
Appendix 3: Checklist 13
Literature 14

Fisioterapie vir FSHD
1 Introduction
Due to the rarity of FSHD, little information is
available to physiotherapists about the treatment
and guidance of people with FSHD. Hence this
issue. The information has been compiled in
collaboration with the Royal Netherlands Society
for Physiotherapy (KNGF), the FSHD expertise
centre, several specialised physiotherapists and
rehabilitation doctors, and patient representatives.
The content is aligned with the "evidence based"
FSHD guideline of the American Academy of
Neurology (2015). Scientific literature has been
used as much as possible. If this was not available,
the information was drawn up on the basis of a
consensus of experts (see the “Acknowledgement”
paragraph at the end).
2 Clinical Description
Facioscapulohumeral dystrophy (FSHD, also
known as Landouzy Dejerine disease) is an
autosomal dominantly inherited muscular disease
(neuromuscular disease) with the following
characteristics:
• asymmetric muscle weakness occurs;
• symptoms usually start in the face (facio) and/or
around the shoulders (scapula, humerus);
• FSHD is a progressive disease, the severity and
course of the complaints differing from person
to person.
There are two types of FSHD (type 1 and 2), the
symptoms being the same.
Symptoms of muscle
weakness begins usually
in the face
3

Physiotherapy for FSHD
Background information
Therapy
There is currently no curative therapy or medication for FSHD. Treatment is aimed at optimising
the quality of life, maintaining fitness/functioning and measures to save energy and prevent
complications.
Diagnosis
To be able to make a diagnosis of FSHD, a physical examination is initially performed by a
(paediatric) neurologist. In addition, further DNA research is performed and the creatine kinase
level in the blood is determined. Often FSHD is already known in a family (unless it concerns a
spontaneous mutation), which is why a family history is often also taken.
Heredity and FSHD
In 95% of the cases, people with FSHD have variant type 1. In that case, if one of the parents
has the disease, each child has a 50% chance of inheriting the disease. By changing hereditary
material (a mutation), FSHD can also develop ‘spontaneously’. In the remaining 5% (FSHD type 2
and mosaicism) the heredity is more complex and the chance that a child will develop the disease
is less than 50%.
Prevalence
FSHD is estimated to be one of the most common progressive muscle diseases, affecting at least
500,000 people worldwide. The actual incidence of the disease is probably much higher, as FSHD
is often misdiagnosed. In South Africa, only 67 patients with FSHD are registered on the database
of the Muscular Dystrophy Foundation of South Africa.
Progression
FSHD is a progressive muscle disease. The order in which the symptoms occur differs from person
to person, even in the same family. The symptoms can start in childhood or (much) later. In men,
the first symptoms usually start around the age of 16, in women around the age of 20. Usually
the disease starts in the facial muscles: the eyes do not close properly and the muscles around
the mouth weaken. A little later, the muscle strength in the shoulders and upper arms usually
decreases. The disease then slowly increases in severity, but this also differs from person to
person. About 20% of people with FSHD are wheelchair dependent after the age of 50.
Further information for the general
medical practitioner about FSHD is
available in the brochure Informatie
voor de huisarts over FSHD (2015).
4

Physiotherapy for FSHD
3 Physiotherapeutic Diagnosis
For the methodical process of intake, examination
and drawing up of a treatment plan for people with
FSHD, the current guidelines for physiotherapy
records are generally used. This chapter focuses
on the physiotherapeutic diagnosis and treatment
of people with FSHD.
Medical history
During the anamnesis, the physiotherapist asks
questions that are necessary to map out the
patient’s health problems. At the start of the
treatment, the physiotherapist must be aware of
the current functioning, the disorders and the
limitations present, the social support (see the ICF
model for FSHD, Appendix 2) and the patient’s
demand for assistance and expectations. Appendix
3 is a checklist that the physiotherapist can use to
identify the complaints specific to FSHD.
Pathology specific functional
disorders
Asymmetrical muscle weakness due to atrophy
FSHD is characterised by asymmetrical (usually)
slowly progressive muscle weakness. Below is a
description of the common pattern in FSHD.
Pathology specific muscle weakness
• Reduced facial expression (facio) - The facial
expression is often the first to be affected in
people with FSHD. Muscle weakness in the
face may hamper communication and facial
expression. The eyes do not close properly and
the muscles around the mouth relax. This makes
it more difficult to pucker the mouth.
• Shoulder girdle (scapula) - In the subsequent
phase, the muscle strength decreases around
the shoulder blade, often asymmetrically. More
information about shoulder problems is in
section 4 under “Movement control”.
• Weak foot lifters (ankle dorsiflexors) - Ankle
dorsiflexors are often more affected than the
plantar flexors. This creates foot drop. The
consequence of this is an increased risk of
falling.
• Reduced trunk stability - In addition to the
above muscles, other skeletal muscles are often
affected, especially the muscles around the
pelvis and the abdominal muscles. This creates
a deepened lumbar lordosis.
• Hip and thigh muscles - Ultimately there is also
weakness in the hip and thigh muscles.
• Neck muscles In some people with FSHD, the
neck muscles are affected.
Condition (cardiovascular)
Due to muscle weakness and fatigue, many
people with FSHD lead a sedentary lifestyle. This
has a negative effect on cardiopulmonary and
hemodynamic parameters. A limited condition
leads to an increase in fatigue (see also the
paragraph under “Fatigue” below).
Pain
Muscle and/or joint pain is a common complaint in
people with FSHD that is often underestimated. In
the Netherlands about 80% of patients with FSHD
indicate that they suffer from chronic persistent
pain or periods of pain. With FSHD the pain is
localised in the lower back, legs, shoulders, hips
and neck. Pain in arms and hands is also regularly
mentioned by patients.
5

Physiotherapy for FSHD
Fatigue
Severe fatigue is experienced by as many as 61%
of people with FSHD. As a result of the fatigue,
people with FSHD become limited in their physical
functioning and social participation.
Balance
People with FSHD have reduced muscle strength
in the trunk, pelvis and lower extremities. This
causes disturbances in posture, balance and gait.
As a result, patients with FSHD are five times more
likely to fall than people who do not have FSHD.
Research and measuring
instruments
The purpose of the examination (inspection and
physical examination) is to objectify the disorders,
limitations and participation problems that the
patient has brought to the fore in their medical
history. Although there are no specific measuring
instruments for FSHD, it is recommended to use
the standard measuring instruments depending on
the problem indicated by the patient (for example,
the VAS or Visual Analog Scale for pain).
Respiratory insufficiency
Although respiratory insufficiency is not a
standard occurrence in people with FSHD, it is
recommended to routinely test lung function in
people who are (severely) affected. Some patients
develop muscular weakness of the respiratory and
auxiliary muscles, which makes breathing and
coughing up mucus difficult (reduced coughing
force). In addition, other symptoms can develop:
• Nocturnal hypoventilation usually starts at night
during sleep. This can cause excessive sleepiness
during the day as well as morning headaches,
morning drowsiness and fatigue. Respiratory
failure can also seriously affect sleep rhythm,
daily activities and general quality of life.
Severe fatigue is
experienced by as much
as 61% of people with
FSHD
• Aspiration pneumonias are more common in
people with FSHD compared to people who do
not have FSHD. Due to eating and swallowing
problems (possibly combined with increased
weakness of the respiratory muscles and
reduced coughing force) there is an increased
risk of developing pneumonias.
Eating, swallowing and speech
problems
Patients with FSHD may experience different kinds
of problems with speaking and with eating and
drinking. Speech often sounds soft, and eating
and drinking may lead to spilling of food from the
mouth. Due to insufficient strength of the tongue
and throat muscles, solid food in particular can
linger in the throat. The complaints are generally
mild in nature. In addition, there may be problems
bringing food to the mouth due to weakness of
the arm muscles. Eating, swallowing and speech
problems sometimes also cause problems
for patients in a social context (for example,
embarrassment about the manner of eating).
6

Physiotherapy for FSHD
4 Treatment
The role of the physiotherapist
The physiotherapist guides the patient in the
process of learning to cope with his or her
limitations in activities and participation in daily
life and optimising and preserving body functions
as much as possible. The physiotherapist cannot
influence the disease process itself. However,
general physical condition and coping with fatigue
and pain are aspects that can be influenced by the
physiotherapist. Due to the progressiveness of
FSHD, it is advisable for the physiotherapist to act
proactively and to discuss with the patient in good
time the potential problems that could result from
the disease in future.
complaints. Entrapment neuropathies can also
develop between pectoralis minor and thorax. In
addition, in some people with FSHD, subluxations
of the glenohumeral joint may develop. In cases
of shoulder complaints and FSHD, always be alert
to other possible causes, such as thoracic outlet
syndrome (TOS syndrome) or plexus lesion.
Refer the patient for specific treatment advice
on shoulder problems to a team of specialists in
muscle diseases (see section 5).
The patient as partner
Decisions that affect a patient’s treatment, health
and quality of life are made through a shared
decision-making process between healthcare
provider and patient. The physiotherapy
treatment of FSHD is therefore also done in close
consultation with the patient. An analysis of the
complaints is done together with the patient.
Based on the patient’s wishes and request for help,
joint treatment goals are formulated. In addition,
attention to the psychosocial influence of FSHD
is also important in treatment. Depending on the
patient’s wishes, the physiotherapist can include
the following aspects when considering treatment
and/or treatment goals.
Possible treatment goals for the
physiotherapist
Movement control: treatment of shoulder
problems
The abnormal position and movement of the
shoulder blades, so-called scapular dyskinesia
(SD), are amongst the most striking clinical
features of FSHD. This creates shoulder problems
that are an important part of the limitations that
affect the lives of people with FSHD. The shoulder
blade is mainly dependent on the timing and
strength of the functioning trapezius muscle and
serratus anterior muscle for its stabilisation on
the thorax. Based on the experience of experts, it
appears that the serratus muscle often fattens and
atrophies. As a result, the scapula typically tends
to rotate sharply downward and develops anterior
tilt. This can cause overloading of the proximal
scapula muscles and associated neck and shoulder
7

Physiotherapy for FSHD
Increasing muscle strength (strength
endurance)
Strength training leads neither to an improvement
of muscle strength nor to damage or reduction
of muscle strength. Therefore muscle strength
training does not appear to be contraindicated in
FSHD. It is advised to start with strength endurance
training if there is clear inactivity or disuse.
Strength endurance training is greatly preferable
to maximum strength training. Opt for functional
exercises.
Fitness (cardiovascular functions),
aerobic exercise
The general advice for people with FSHD is to lead
as active a life as possible. Aerobic training is
recommended for people with FSHD at a frequency
of three times a week for 30 minutes. The FSHD
expertise centre recommends keeping the heart
rate between 50 and 75% of the maximum heart
rate during training. The maximum heart rate
can be calculated using the Tanaka formula: 208
− (0.7x age). If the peripheral muscle weakness
is too great to exert enough effort to exercise
in the aerobic zone, the Borg RPE scale (Ratings
of Perceived Exertion) can also be used. The
training intensity is ideally between 11 and 13.
It is important that the training be built up very
slowly for example in steps of 5% per week. It is
recommended to start with an intensity of 50-55%
of the HRmax. Also, patients should not experience
extreme fatigue and/or develop additional muscle
pain during or after exercise, other than normal
muscle pain (recovery within 48 hours). Be aware
that patients with FSHD can perform inconsistently
and the load-bearing capacity can vary from time
to time.
Pain reduction
Little scientific research has been done into the
relationship between pain and FSHD. This has
to do with the elusive, subjective nature of pain.
The treatment of pain is therefore not specifically
aimed at FSHD in FSHD patients but concerns
the standard advice given for pain treatment.
According to the American guideline, it helps
when physiotherapists provide the patient with
insight into the pain mechanism. In addition,
it is recommended to use orthoses/aids (see
the subsection “Orthesiology”) and relaxation
therapy. Hydrotherapy can also have a positive
effect on pain reduction according to the King
physiotherapy guideline. Overexertion must be
avoided because this has a negative effect on pain
complaints. The balance between exercise and
relaxation is therefore very important for people
with FSHD.
Energy management and coping
with fatigue
Daily activities may constitute the topmost level
of activity for patients with FSHD. In both the
American FSHD guideline and the Voet studies,
aerobic training is described as safe and offers
benefits for reducing fatigue, as in the case of
other muscle diseases (see also the subsection
“Condition”). Together with an occupational
therapist, the physiotherapist can look at the load
and load capacity in connection with the fatigue
and pain (with the aid of the Activity scale, among
other things).
Fall prevention
The reduced trunk balance in people with FSHD
increases the risk of falling. Falls are common
in people with FSHD, especially forward and
backward. Preventive measures can reduce falls as
much as possible, for example by means of a risk
inventory of the immediate living and residential
environment. Patients can also learn how to deal
best with an actual fall (fall course). Orthoses
and/or aids can also be used (see the subsection
“Orthesiology”).
8

Physiotherapy for FSHD
Lung physiotherapy
To determine whether there is any respiratory
muscle weakness, the physiotherapist can
perform a quick test with a spirometer. In any case
the FVC and the PCF are measured, both sitting
and lying down. If there is indeed a reduced vital
capacity and/or cough strength, it is important
that a pulmonologist carry out a more extensive
examination. For advice on lung physiotherapy,
contact a team of muscle disease specialists (see
section 5).
Orthesiology
Devices and orthoses can provide support for
people with FSHD. People with FSHD can retain
energy through the use of orthoses and/or aids.
• When purchasing new aids and/or orthoses, the
patient must be referred by a GP to a rehabilitation
doctor (via a team of muscle disease specialists).
5 Organisation of Care
FSHD is a rare and complex progressive condition.
Patients with FSHD can benefit greatly from
a multidisciplinary approach by a team with
knowledge of and experience with FSHD. There are
several multidisciplinary teams of care providers
in the Netherlands specialising in FSHD that you
can consult for advice on treatment.
•Expertise centre The Netherlands has an
expertise centre with two locations for FSHD
that work together closely. The expertise centre
offers multidisciplinary treatment, guidance
and periodic monitoring and is also responsible
for providing treatment advice and for the
dissemination of disease-specific knowledge
to colleagues elsewhere in the country. With
complex healthcare questions or questions
about current and future research, you can
contact the FSHD expertise centre at either of
the following:
- The Radboudumc [Radboud University Medical
Center] in Nijmegen. If you have questions and
require advice about medical and rehabilitation
treatment and guidance, please contact the
rehabilitation department.
- The Leiden University Medical Center in Leiden.
The LUMC specialises in the genetic diagnosis
of FSHD.
Contact details of the expertise centre:
https://www.spierziekten.nl/zorgwijzer/zoeken/
categorie/medische-zorg/
On its webpage, the “zorgwijzer” (care guide)
describes the expertise centre as having advanced
knowledge of FSHD.
9

Physiotherapy for FSHD
• Muscle disease rehabilitation teams Several
rehabilitation institutions have a multidisciplinary
muscle disease rehabilitation team with
knowledge of and experience in the treatment
and supervision of muscle diseases such as
FSHD. For advice and with questions about FSHD
related to problems in daily life due to FSHD,
please contact the muscle disease rehabilitation
teams. Section 6 contains the contact details.
Contact information for the muscle disease
rehabilitation teams:
www.spierziekten.nl/zorgwijzer/zoeken/
categorie/revalidatie.
Here you will also find physiotherapists who
specialise in muscle diseases.
Referral It is recommended that patients
go for a check-up once every two years with
a specialised neurologist or rehabilitation
physician. The specialist doctor monitors the
course of the disease and can refer to other
specialists if necessary. If the patient is not
under treatment/supervision, a referral can be
requested via the GP in consultation with the
patient.
Reimbursement - FSHD is a muscle disease and is
included in the list of chronic conditions.
Muscular Dystrophy Foundation of
South Africa
NATIONAL OFFICE
E-mail: gmnational@mdsa.org.za
The expertise centre and the muscle disease
rehabilitation teams often work together. In many
cases the patient’s treatment is supervised by one
of the above centres or teams. Try to coordinate
the physiotherapy treatment as much as possible
with the expertise centre or muscle disease
rehabilitation team under which the patient
is supervised, and discuss specific points for
attention.
• Contact information for specialised care
institutions: The healthcare guide of Spierziekten
Nederland contains an overview of paramedics,
specialists in diagnostics, rehabilitation and
respiratory support for FSHD, such as the
CTB [centra vir thuisbeademing / centres for
respiratory homecare] and other UMCs. See
www.spierziekten.nl/zorgwijzer.
Website: www.mdsa.org.za
Tel: 011 472-9703
Address: 12 Botes Street, Florida Park, 1709
CAPE BRANCH (Western Cape, Northern Cape &
part of Eastern Cape)
E-mail: cape@mdsa.org.za
Tel: 021 592-7306
Address: 3 Wiener Street, Goodwood, 7460
GAUTENG BRANCH (Gauteng, Free State,
Mpumalanga, Limpopo & North West)
E-mail: gmgauteng@mdsa.org.za
Tel: 011 472-9824
Address: 12 Botes Street, Florida Park, 1709
Pretoria Office
E-mail: swpta@mdsa.org.za
Tel: 012 323-4462
Address: 8 Dr Savage Road, Prinshof, Pretoria
KZN BRANCH (KZN & part of Eastern Cape)
E-mail: kzn@mdsa.org.za
Tel: 031 332-0211
Address: Office 7, 24 Somtseu Road, Durban, 4000
10

Physiotherapy for FSHD
Appendix 1: Summary
FSHD
Facioscapulohumeral dystrophy (FSHD) is a
hereditary muscle disease (neuromuscular
disease).
A few facts about FSHD:
• Symptoms usually start in the face and/or
around the shoulders.
• Asymmetric progressive muscle weakness is
characteristic of FSHD.
• The complaints differ from person to person.
• There are two types of FSHD, the symptoms
being the same.
• Communication problems may arise as a result
of facial muscle weakness.
Organisation of care
Patients with FSHD can benefit greatly from
the multidisciplinary approach of a team with
knowledge of and experience with FSHD. Please
contact:
• an expertise center: the Radboudumc in
Nijmegen if you have questions about medical
and rehabilitation treatment and guidance,
via the rehabilitation department; the Leiden
University Medical Center in Leiden, which
specialises in the genetic diagnosis of FSHD;
• muscle disease rehabilitation teams who have a
lot of knowledge of rehabilitation treatment for
FSHD.
The contact details can be found via: www.
spierziekten.nl/zorgwijzer.
The ICF model can be found in Appendix 2.
Treatment
There is currently no curative or delaying therapy
or medication for FSHD. The physiotherapist
cannot influence the disease process itself but can
influence the general physical condition and how
to deal with fatigue and pain. The physiotherapist
tries to work with the patient to ensure that the
patient can function as independently as possible
in daily life.
An analysis of the complaints is done in collaboration
with the patient. Based on the patient’s wishes
and request for help, joint treatment goals are
formulated. The physiotherapist’s treatment plan
can be useful for a patient with FSHD in:
• maintaining or improving condition;
• pain relief;
• energy management and coping with fatigue;
• increased strength endurance;
• fall prevention / fall training;
• orthesiology;
• movement control for shoulder problems (in
collaboration with a specialised centre);
• lung physiotherapy.
11

Physiotherapy for FSHD
Appendix 2: ICF model
The figure below provides an overview of the health problems that often accompany FSHD and the
factors that can influence these problems, based on the International Classification of Functioning,
Disability and Health (ICF) model established by the World Health Organization (2001). In this regard see
also King and Pandya (2009), Rijken et al. (2015), Tawil et al. (2015) and Wilbers et al. (2010).
Illness/Condition
FSHD
Functions and
anatomical properties,
disorders
Asymmetric muscle weakness:
o (to) facial muscles
o Shoulder girdle
o Dorsal flexors ankle
o Lower extremities, trunk and
upper extremities
• Reduced fitness
(cardiovascular)
• Pain
• Fatigue
• Balance (reduced trunk
stability, risk of falling)
• Breathing problems
• Eating, swallowing and speech
problems
• Hearing loss and problems
with the eyes
• Communication problems,
both verbally and nonverbally
(as a result of muscle
weakness).
Activities
Reduced motor skills:
• Walking ability
• Speech and/or facial
expressions
• Self-care
• Transfers
• Social functioning
• Falling.
Participation
Problems with:
• relationships: family, intimate
and other relationships
• communication
• personal and social
independance/ dependance
• can no longer work (fully), fail
to meet the requirements of
the work situation
• social life
• recreation and leisure.
Personal factors (hindering or
promoting)
• Self-image/ insight into illness
• Behaviours and coping style
• Insight into load and resilience (patients try
to save as much energy as possible)
• Overload.
External factors (hindering or
promoting)
• Reduced facial expression → consequence:
problems in communication
• Support environment
• Adaptation in living and living environment,
aids and means of transport
• Informal care
• Contact with fellow sufferers.
12

Appendix 3: Checklist
Physiotherapy for FSHD
Common consequences with FSHD
Muscles and movement
I experience it as
a problem
Often stumbling or falling yes / no yes / no
Problems moving independently yes / no yes / no
Speaking unclearly yes / no yes / no
Difficulty chewing and/or swallowing yes / no yes / no
Often choking on saliva or food yes / no yes / no
Muscle weakness (different on both sides) yes / no yes / no
Pain yes / no yes / no
Cold (to the touch) limbs yes / no yes / no
Blue/white discolouration of toes and fingers yes / no yes / no
Tingling or loss of feeling in hands/arms/legs yes / no yes / no
Dropping things and/or difficulty lifting objects yes / no yes / no
Difficulty combing hair yes / no yes / no
The heart
Palpitations yes / no yes / no
Dizziness yes / no yes / no
Breathing
Recurring pneumonia yes / no yes / no
Having to breathe often and heavily yes / no yes / no
Poor fitness and stamina yes / no yes / no
Little cough force yes / no yes / no
Sleeping and drowsiness
Fatigue yes / no yes / no
Sleepiness during the day yes / no yes / no
Restless sleep yes / no yes / no
Scary or intense dreams yes / no yes / no
Headache on awakening yes / no yes / no
Care and facilities
Self-care (brushing teeth, washing, dressing and undressing)
yes / no
I experience my
environment as a
problem
yes / no
Care or help at home yes / no yes / no
Use of aids/resources yes / no yes / no
Communication and social contacts
Social contacts (entering into new contacts or maintaining
them)
Lack of understanding or acceptance of illness from
the environment
Daily activities
Work (finding work, keeping work, difficulty of work,
suitability of work)
yes / no
yes / no
yes / no
yes / no
yes / no
yes / no
School or study yes / no yes / no
Participation in sports or hobbies yes / no yes / no
Participation in housekeeping yes / no yes / no
13

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http://www.who.int/classifications/icf/en/.

Physiotherapy for FSHD
Acknowledgement
This brochure is the result of a collaboration
between Spierziekten Nederland and the Royal
Netherlands Society for Physiotherapy or Koninklijk
Nederlands Genootschap voor Fysiotherapie
(KNGF). This brochure is one of a number of
informative brochures for physiotherapists. These
publications can be downloaded and ordered via
www.spierziekten.nl.
Spierziekten Nederland
Spierziekten Nederland is an association for, but
especially also of, people with a neuromuscular
disorder (muscle disease). Spierziekten Nederland
stands up for people with a muscle disease. It is
about better quality of care, effective scientific
research, mutual contact and good education
and information, and is also for doctors and
other professional care providers. Spierziekten
Nederland works closely with medical specialists,
physiotherapists, occupational therapists and
researchers. There is a close relationship with
the university medical centres and specialised
rehabilitation centres. This enables bottlenecks in
healthcare to be quickly identified and resolved.
Spierziekten Nederland also plays an important
role in stimulating scientific research.
Lt. Gen. van Heutszlaan 6
3743 JN BAARN
Telephone: 035 548 04 80
E-mail: mail@spierziekten.nl
www.spierziekten.nl
Royal Netherlands Society for
Physiotherapy - Koninklijk
Nederlands Genootschap voor
Fysiotherapie (KNGF)
Editorial staff
Mrs C. van Esch MSc, medewerker kwaliteit van
zorg, Spierziekten Nederland
Mrs dr. A.M.C. Horemans, hoofd kwaliteit van
zorg, Spierziekten Nederland
Mrs C. Verwer, medewerker zorg, Spierziekten
Nederland
Mrs D. de Groot, Projectmedewerker Beleid &
Ontwikkeling, Koninklijk Nederlands Genootschap
voor Fysiotherapie
Mrs drs. M. van der Wurff, medewerker
communicatie, Spierziekten Nederland
This publication was produced with contributions
and advice from dr J.T. Groothuis, rehabilitation
docter, Radboudumc, dr J.J. den Boer, D.M. Maas
MSc, and J. IJspeert, MSc, physiotherapists from
the Department of Rehabilitation at Radboudumc,
drs. S. Knuijt, dr. B.J.M. de Swart, J. Weikamp
MA, speech therapists at Radboudumc, prof.
dr. G.W.A.M. Padberg, Emeritus Professor of
Neurology, Radboudumc, dr. P.G. Erdmann,
physiotherapist Avans Hogeschool, K. Pelger
children’s physiotherapist Mytylschool Gabriël and
core group member, F. de Ruiter, physiotherapist
Roessingh Centre for Rehabilitation and core
group member, drs. R.O. van Vliet, rehabilitation
docter at Roessingh Centre for Rehabilitation, dr.
N.B.M. Voet, rehabilitation docter at Klimmendaal,
Anke Lanser, patient representative. The text has
been commented on by various patients.
Financing
This brochure has been realised in part thanks to
the financial contribution of the Innovatiefonds
Zorgverzekeraars.
Baarn, 2017
The KNGF is the umbrella association for
physiotherapists and ensures the continuous
optimal quality and good position of
physiotherapy. The KNGF does this with a focus
on physiotherapists, but also for patients.
Stadsring 159b
3817 BA AMERSFOORT
Telephone: 033 467 29 00
E-mail: info@kngf.nl
www.kngf.nl and www.defysiotherapeut.com
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