FSHD Brochure_

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Physiotherapy for FSHD• Muscle disease rehabilitation teams Severalrehabilitation institutions have a multidisciplinarymuscle disease rehabilitation team withknowledge of and experience in the treatmentand supervision of muscle diseases such asFSHD. For advice and with questions about FSHDrelated to problems in daily life due to FSHD,please contact the muscle disease rehabilitationteams. Section 6 contains the contact details.Contact information for the muscle diseaserehabilitation teams:www.spierziekten.nl/zorgwijzer/zoeken/categorie/revalidatie.Here you will also find physiotherapists whospecialise in muscle diseases.Referral It is recommended that patientsgo for a check-up once every two years witha specialised neurologist or rehabilitationphysician. The specialist doctor monitors thecourse of the disease and can refer to otherspecialists if necessary. If the patient is notunder treatment/supervision, a referral can berequested via the GP in consultation with thepatient.Reimbursement - FSHD is a muscle disease and isincluded in the list of chronic conditions.Muscular Dystrophy Foundation ofSouth AfricaNATIONAL OFFICEE-mail: gmnational@mdsa.org.zaThe expertise centre and the muscle diseaserehabilitation teams often work together. In manycases the patient’s treatment is supervised by oneof the above centres or teams. Try to coordinatethe physiotherapy treatment as much as possiblewith the expertise centre or muscle diseaserehabilitation team under which the patientis supervised, and discuss specific points forattention.• Contact information for specialised careinstitutions: The healthcare guide of SpierziektenNederland contains an overview of paramedics,specialists in diagnostics, rehabilitation andrespiratory support for FSHD, such as theCTB [centra vir thuisbeademing / centres forrespiratory homecare] and other UMCs. Seewww.spierziekten.nl/zorgwijzer.Website: www.mdsa.org.zaTel: 011 472-9703Address: 12 Botes Street, Florida Park, 1709CAPE BRANCH (Western Cape, Northern Cape &part of Eastern Cape)E-mail: cape@mdsa.org.zaTel: 021 592-7306Address: 3 Wiener Street, Goodwood, 7460GAUTENG BRANCH (Gauteng, Free State,Mpumalanga, Limpopo & North West)E-mail: gmgauteng@mdsa.org.zaTel: 011 472-9824Address: 12 Botes Street, Florida Park, 1709Pretoria OfficeE-mail: swpta@mdsa.org.zaTel: 012 323-4462Address: 8 Dr Savage Road, Prinshof, PretoriaKZN BRANCH (KZN & part of Eastern Cape)E-mail: kzn@mdsa.org.zaTel: 031 332-0211Address: Office 7, 24 Somtseu Road, Durban, 400010
Physiotherapy for FSHDAppendix 1: SummaryFSHDFacioscapulohumeral dystrophy (FSHD) is ahereditary muscle disease (neuromusculardisease).A few facts about FSHD:• Symptoms usually start in the face and/oraround the shoulders.• Asymmetric progressive muscle weakness ischaracteristic of FSHD.• The complaints differ from person to person.• There are two types of FSHD, the symptomsbeing the same.• Communication problems may arise as a resultof facial muscle weakness.Organisation of carePatients with FSHD can benefit greatly fromthe multidisciplinary approach of a team withknowledge of and experience with FSHD. Pleasecontact:• an expertise center: the Radboudumc inNijmegen if you have questions about medicaland rehabilitation treatment and guidance,via the rehabilitation department; the LeidenUniversity Medical Center in Leiden, whichspecialises in the genetic diagnosis of FSHD;• muscle disease rehabilitation teams who have alot of knowledge of rehabilitation treatment forFSHD.The contact details can be found via: www.spierziekten.nl/zorgwijzer.The ICF model can be found in Appendix 2.TreatmentThere is currently no curative or delaying therapyor medication for FSHD. The physiotherapistcannot influence the disease process itself but caninfluence the general physical condition and howto deal with fatigue and pain. The physiotherapisttries to work with the patient to ensure that thepatient can function as independently as possiblein daily life.An analysis of the complaints is done in collaborationwith the patient. Based on the patient’s wishesand request for help, joint treatment goals areformulated. The physiotherapist’s treatment plancan 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 (incollaboration with a specialised centre);• lung physiotherapy.11
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Page 3 and 4: Fisioterapie vir FSHD1 Introduction
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Page 13 and 14: Appendix 3: ChecklistPhysiotherapy
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