Volya

Exercises for FSHD — moderate aerobic + light-to-moderate strength SAFE + IMPROVES function (Bankolé 2016 + Olsen 2005)

FSHD is the 3rd most common muscular dystrophy with distinctive asymmetric face + shoulder presentation. Moderate aerobic + light-to-moderate strength is SAFE and IMPROVES function (Bankolé 2016 + Olsen 2005 + van der Kooi 2007). 75% retinal vasculopathy needs ophthalmology baseline.

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This page is informational. Volya is not a medical device and does not diagnose, treat, prevent, or cure any condition. If you have a chronic condition, are pregnant, post-op, or on medication, talk to your clinician before changing your diet or training programme.

Tawil 2015 + Statland 2016 + FSHD Society 2020 standards. Facioscapulohumeral muscular dystrophy is the third most common muscular dystrophy after DMD and myotonic dystrophy, prevalence ~1:8,000-20,000. Autosomal dominant Type 1 (D4Z4 contraction to <11 repeats on chromosome 4q35, permitting toxic DUX4 expression in muscle) accounts for ~95%; Type 2 (SMCHD1 mutations) accounts for the rest with similar phenotype. The presentation is distinctive: ASYMMETRIC + slow + step-wise progression with periods of stability + face involvement (myopathic facies, inability to whistle, sleeping with eyes open from orbicularis oculi weakness) + shoulder girdle (scapular winging — bilateral but often asymmetric, popeye look from preserved deltoid amid wasted scapular stabilisers) + abdominal (Beevor sign — umbilicus moves upward on neck flexion supine) + foot drop (later). Routine cardiac and respiratory surveillance is NOT indicated in classic Type 1 (low yield, in contrast to DMD/BMD/myotonic where it IS), but severe early-onset and infantile-onset cases DO need echo + spirometry. Retinal vasculopathy (Coats-like) affects ~75% per Lemmers 2010 — ophthalmology baseline + monitoring + retinal screening if symptomatic. Hearing loss in Type 1 — audiometry baseline. Exercise per Bankolé 2016 + Olsen 2005 + van der Kooi 2007: moderate aerobic + light-to-moderate strength IS safe and IMPROVES function — overturned the prior 'avoid exercise to preserve muscle' framing. AVOID eccentric peak loading. Daily ROM + scapular stabilisation programs essential.

Volya's catalogue carries the foundation moves: supported-glute-bridge for posterior chain low-intensity activation (gluteal weakness common, AVOID max-effort), wall-push-up for upper-body push at low load (shoulder + scapular involvement makes traditional push-up disabling fast), scapular-retraction for scapular stabilisers (the disability driver in FSHD — winging compromises overhead function), cat-cow for spinal mobility + Beevor compensation, supine-knee-to-chest for low-back release + hip flexor stretch, diaphragmatic-breathing for respiratory training (low yield Type 1 surveillance but the move itself is foundational), seated-march for cardio without joint impact + safe foot-drop alternative, ankle-pump for circulation + ROM + foot-drop counter, calf-raise-rehab for distal-strength preservation + AFO/foot-drop counter (one of the FSHD distal involvement axes). The AI coach also knows the nutrition side — anti-inflammatory Mediterranean backbone (DUX4-driven inflammation is a target pathway), omega-3 1-2 g/day per Calder 2006, lean-mass support protein 1.2-1.5 g/kg spread across meals + leucine 2.5-3 g per meal, retinal vasculopathy 75% Coats-like — anti-inflammatory + AVOID smoking + AVOID hypertension drivers + lutein/zeaxanthin (leafy greens, eggs) for retinal photoreceptor support (Bone 2003), vit D + Ca for bone, creatine monohydrate 3-5 g/day modest benefit (Walter 2000 + Tarnopolsky 2004), AVOID eccentric peak loading + smoking + alcohol excess + ultra-processed/high-sodium. CRITICAL: FSHD Society + Friends of FSH Research + MDA + neurology (FSHD-experienced) + ophthalmology + retinal screening if symptoms + audiology Type 1 + PT/OT (scapular fixation evaluation + foot drop AFO) + cardiology + pulmonology if severe/infantile + dietitian + family genetic counselling (autosomal dominant — children + reproductive considerations). This is NEVER a replacement for FSHD-experienced multidisciplinary care.

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FSHD is the 3rd most common muscular dystrophy with distinctive asymmetric face + shoulder presentation. Moderate aerobic + light-to-moderate strength is SAFE and IMPROVES function (Bankolé 2016 + Olsen 2005 + van der Kooi 2007). 75% retinal vasculopathy needs ophthalmology baseline.

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