Inherited bone marrow failure syndromes

 

Inherited bone marrow failure syndromes

 

§        25% of paediatrics and 10% of adults presenting with AA have an inherited aetiology

§        Mutated genes have been identified on all but TAR

§        Often have macrocytosis and increased fetal Hb

 

Fanconi anaemia

§        AR / XLR

§        Median age of diagnosis 6 / death 23

§        Pancytopenia

§        Very high rate of secondary complications

§        Preaplastic and preleukaemic

§        Associated with solid tumours

§        Head and neck SCC, liver

§        Gynaecological

§        Brain

§        Characteristic birth defects (25% normal)

§        Café au lait / hyper/ hypopigmentation

§        Short stature

§        Microcephaly / Microphthalmia / triangular face

§        Abnormal thumbs with/ without hypoplastic radii

§        Hypogonadism and infertility (some reports of pregnancy / male fertility)

§        Ectopic kidneys

§        Diagnosis (median 6 years)

§        PB T-lymphocytes exposed to a DNA cross-linking agent eg. MMC, DEB (diepoxybutane)

§        Not on marrow, increased false negatives

§        Metaphase spreads have increased chromosomal breakages

§        Definitive proof is gene identification (13 genes to date FANCA to N)

§        Clinical course

§        50% bone marrow failure causing death or transplant

§        30% solid tumour

§        10% leukaemia (mainly AML – excluding MDS)

§        Can spontaneously remit – due to repair of DNA defect – remain at risk of solid tumours.

§        Monitoring

§        FBC 3-4monthly

§        BM annually including cytogenetics

§        Solid tumour surveillance (head and neck / gynae)

§        Effects of HPV vaccine on solid tumour rates awaited with interest

§        Therapy

§        Androgens +/- GCSF / EPO for AA

§        SCT cures bone marrow failure

§        Recommended if HLA-matched sibling when (Hb<8 Plts <30 Neut <0.5) consider MUD

§        Increases risk of solid tumours (4 fold / 16 years earlier)

§        Recommended if BM failure and an HLA-matched sibling

§        Conditioning is specialised because of the chromosomal instability

·        Eg. Fludarabine, ATG

§        Siblings must be proven to not have FA

§        Solid tumours – modified chemo / radiotherapy

 


Dyskeratosis Congenita

§        AR, AD, XLR

§        Often diagnosed late (median 15 – range 0-75) death 45

§        Pancytopenia

§        Characteristic features (often absent)

§        Lacey reticulated pigmentation

§        Dysplastic nails

§        Oral leukoplakia

§        Pulmonary / hepatic fibrosis

§        Preaplastic and preleukaemic

§        Assoc with solid tumours

§        Head and neck

§        Oesophageal  and colorectal

§        Diagnosis

§        Telomere length in leucocyte subsets using Flow-FISH (reduced length)

§        Therapy is similar as for FA

§        Androgens

§        Not recommended with GCSF because of splenic peliosis and rupture

§        Conditioning for SCT difficult because of risk of pulmonary and liver fibrosis in DC


 

Diamond-Blackfan Anaemia

§        AD

§        Median age of diagnosis 3 months / death 39

§        Anaemia (macrocytic) and erythroid hypoplasia (pancytopenia rare – should question diagnosis)

§        Preleukaemic, preaplastic rarely

§        Assoc with ostogenic sarcoma

§        Characteristic defects

§        Flattened thenar muscles

§        Short stature

§        Triphalangeal thumbs

§        Diagnosis

§        Increased red cell adenosine deaminase levels

§        Treatment

§        Good response to corticosteroids

§        25% spontaneous remission

§        Poor response to steroids

§        Transfusions and iron chelation

§        SCT has been used successfully


 

Shwachman-Diamond Syndrome

§        AR

§        Median age at diagnosis 1 / death at 35

§        Predominantly neutropenia but may evolve to AA, MDS or leukaemia

§        >70% develop leukaemia (median age18)

§        Not assoc with solid tumours

§        Characteristic features

§        Malabsorption

§        Short stature

§        Metaphyseal dysotosis

§        Learning difficulties

§        Diagnosis

§        Proof of exocrine pancreatic insufficiency (serum trypsinogen levels reduced)

§        Neutropenia of <1.5 on at least 2 occassions

§        >95% have mutations in SBDS gene (Shwachman-Bodie-Diamond Syndrome)

§        Treatment

§        Monitor with yearly bone marrows / regular FBC

§        Supplement pancreatic enzymes and vitamins ADEK

§        GSCF

§        SCT has been successfully used

 



Severe Congenital Neutropenia

§        Sporadic, AR, AD

§        Median age at diagnosis – 3 / death 50

§        Neutropenia, marrow maturation arrest and pyogenic infections

§        Preleukaemic, not pre-aplastic (20-40% at 10 years)

§        No assoc solid tumours

§        No characteristic findings

§        Diagnosis

§        Neutrophil <0.5 on 3 occassions separated by 1 month

§        Exclude cyclical neutropenia

§        By testing fortnightly for 6 weeks

§        Usually a 3 week cycle

§        BM to demonstrate promyelocyte arrest

§        Most have mutation in neutrophil elastase ELA-2 (as do many patients with cyclical neutopenia)

§        Treatment

§        GCSF to get neutrophil >1.5

§        Some evidence to suggest that patients who are poorly responsive to GCSF ie. require higher doses, have a higher rate of leukaemic transformation, and should be considered for SCT


 

Amegakaryocytic thrombocytopenia

§        AR

§        Diagnosed in infancy, median survival 16

§        Evolves to aplastic anaemia (90% by age 13) and preleukaemic (55% AML by age 17)

§        Not assoc with solid tumours

§        No characteristic findings

§        Diagnosis

§        BM – absent/ abnormal megas cf. ITP

§        Due to homozygous mutations in MPL – the thrombopoietin receptor (variability in phenotype depending on the mutations – null/null = worse prognosis)

§        Treatment

§        Androgens

§        SCT (normal conditioning for AA) because of high rate of evolution


 

Thrombocytopenia Absent Radii

§        ? AR – gene not identified

§        Usually diagnosed at birth median survival 70+ years

§        Thrombocytopenia +/- transient leukaemoid reaction

§        Preleukaemic but not preaplastic

§        Not assoc with solid tumours

§        Characteristic features

§        Absent radii but thumbs present

§        Diagnosis

§        BM – absent/ abnormal megakaryocytes

§        Treatment

§        Not usually required – platelet count rises over first year of life

 

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