- First described by Marfan in 1896 in young patient with unusual skeletal deformities & generalised loss of musculature with no evidence of myopathy
Definition
- Heterogeneous group of disorders
- Inheritable generalized disorder of connective tissue
- Common findings of
- Skeletal changes
- Lens dislocation
- Cardiovascular disease
Epidemiology
- 1:10 000 incidence
- Males = Females
- 75% AD
- 25% new mutations (no family Hx)
Pathogenesis
- Defect in cross-linkage of collagen with elastin
- Abnormal fibrillar protein FBN1
- Gene for fibrillin-1 (FBN1) located on long arm of chromosome 15 (15 q15-q21)
- FBN1 is fibrillar protein found in aorta, eye & some CT
- 30% have fibrillin-1 production reduced by half
- 70% produce abnormal fibrillin-1 (abnormal allele)
- Cross linkage of Collagen affected
- Alpha-1 chain defect
- Abnormal fibrillar protein weakens the Elastin fibrils
Diagnosis
- Diagnosis made when patient meets at least 2 (preferably more) of the diagnostic criteria
- Family history
- Musculoskeletal abnormalities
- Cardiac disease
- Eye disease
Clinical Features
- Phenotype variable
- Not all have Marfanoid habitus
- Major physical signs
- Aortic dilatation
- Ectopic lens 60% (superior dislocation)
- Severe kyphoscoliosis
- Chest wall deformity (Pectus excavatum > Carinatum)
- Minor Physical signs
- Generalised ligamentous laxity
- Tall stature (>182cm) with slender limbs
- Arachnodactyly
- Subjective clinical impression
- McKusick’s rule
- Dolichostenomelia
- Arm span three or more inches greater than height
- (also seen in 60% normal males, 20% normal females)
- Lawrence rule
- Lower segment (pubis to heel) longer than upper segment
- Knee sign
- Legs crossed & the toe of top leg reaches the floor
- Thumb sign (Steinbergs test)
- Thumb held in clenched fist extends beyond the ulnar border of hand
- Wrist sign (Bracelet sign)
- Thumb overlaps the 5th finger when encircle the contralateral wrist
- Mitral valve prolapse
- Myopia
- Findings by system include
- Skeletal
- Generalised ligamentous laxity
- Instability/ subluxation or dislocation of
- Patella
- GHJ
- SCJ
- Spine
- Scoliosis
- Thoracic lordosis
- Spondylolithesis or Spondyloptosis
- Hip
- Acetabular protrusio
- Increased incidence of SUFE
- Genu valgum/ recurvatum
- Ankle instability
- Pes planus
- Ocular
- Myopia
- Superior lens dislocation (cf homocysteinuria)
- Cardiovascular
- Aortic dilatation/ dissection (cystic necrosis of the media with pools of mucoid material)
- Aortic valve incompetance
- Mitral valve incompetence
- CNS
- Dural Ectasia
- Meningomyelocoele
- Other
- High arched palate
- Hernias
- Careful cardiac & opthamological follow-up required
- 90% of affected individuals will die of cardiovascular complications
Investigations
Xray
- Metacarpal Index
- Length of MC 2-5 added / width of MC 2-5 added is > 8.5
- 80% normal individuals between 5.4-7.0
- 70% Marfan 8.4-10.4
Differential Diagnosis
- Marfanoid habitus
- Clinical & radiological measurements overlap the normal population
- Ehlers-Danlos Syndrome
- Homocysteinuria
- Larsen’s Syndrome
- Generalized ligamentous laxity
- Congenital contractural arachnodactyly (CCA)
Orthopaedic Implications
- Defective soft tissue
- surgery aimed at soft tissue correction disappointing
- Initial therapy aimed at improving muscle strength & relief of symptoms
- Surgical intervention predominantly directed at kyphoscoliosis
- Scoliosis
- 40-60% of patients with Marfans
- Only 20% of these require treatment
- Similar to Idiopathic but usually develops early (< 9 years) & more progressive curves with poorer prognosis
- Treatment plan as for idiopathic
- Moe & Winter 1975
- Sex incidence equal
- Double right thoracic & left lumbar curves most common – different to idiopathic
- More back pain on presentation
- Younger onset than idiopathic
- Use of Milwaukee brace limited
- Pseudoarthrosis often complicates spinal fusion
- Thorough cardiovascular evaluation required to exclude aneurysm or valvular lesions prior to surgery
- Feet
- Long narrow feet with disproportionately long great toe
- May require custom shoes
- Valgus hindfoot
- Orthosis or arthrodesis
- Long narrow feet with disproportionately long great toe
Future Directions
- Genetic test for Marfan’s
- Screening test to detect quantitative & qualitative deficiencies of fibrillin-1
Congenital Contractural Arachnodactyly
- It is thought that CCA is the syndrome Marfan actually reported
- However, CCA is mapped to a locus on chromosome 5
- In addition to Trachnodactyly, Dolichostenomelia, & Scoliosis CCA demonstrates ear deformities