Fadiga Lúcia, Melo Miguel, Saraiva Joana, Paiva Isabel
Endocrinology, Diabetes and Metabolism Department, Centro Hospitalar e Universitário de Coimbra, EPE, Coimbra, Portugal.
Faculty of Medicine, University of Coimbra, Coimbra, Portugal.
Hormones (Athens). 2022 Mar;21(1):33-40. doi: 10.1007/s42000-021-00325-y. Epub 2021 Oct 15.
X-linked adrenoleukodystrophy (X-ALD) is caused by a mutation in the ABCD1 gene which encodes for a peroxisomal very long-chain fatty acid (VLCFA) transporter. Clinically, X-ALD can present a wide range of phenotypes, from slowly progressive myelopathy to rapid demyelination of brain white matter (cerebral X-ALD-CALD). Adrenocortical insufficiency (AI) occurs mainly in the pediatric age group, and it can be the first manifestation of the disease. Female carriers may also develop manifestations of myelopathy, but later in life. We present two cases of patients who show the heterogeneous clinical manifestations of X-ALD. Case 1 was a man with AI diagnosed at 6 years old and with the first manifestations of myelopathy at 44 years old, which led to the diagnosis of X-ALD. At 47 years, he developed rapidly progressive CALD. Case 2 was a woman with progressive spastic gait disturbance that started at 49 years old. The diagnosis of X-ALD was confirmed at 54 years old after the discovery of a family history of the disease. Mild progression of the neurologic manifestations was noted, but with no signs of AI nor CALD. She is currently 60 years old and under surveillance. We review the current knowledge on X-ALD as concerns its genetic and pathophysiological mechanisms, clinical presentations, diagnosis, treatment, and follow-up. This condition is a real diagnostic challenge. The early detection of AI and CALD, potentially life-threatening complications in men, is very difficult. The surveillance of these complications in female patients still raises controversy.
X连锁肾上腺脑白质营养不良(X-ALD)由ABCD1基因突变引起,该基因编码一种过氧化物酶体极长链脂肪酸(VLCFA)转运蛋白。临床上,X-ALD可呈现多种表型,从缓慢进展的脊髓病到脑白质快速脱髓鞘(脑型X-ALD-CALD)。肾上腺皮质功能不全(AI)主要发生在儿童年龄组,可能是该病的首发表现。女性携带者也可能出现脊髓病表现,但发病较晚。我们报告两例显示X-ALD临床异质性表现的患者。病例1是一名男性,6岁时诊断为AI,44岁时首次出现脊髓病表现,进而诊断为X-ALD。47岁时,他发展为快速进展性CALD。病例2是一名女性,49岁开始出现进行性痉挛性步态障碍。54岁时发现家族病史后确诊为X-ALD。神经系统表现有轻度进展,但无AI或CALD迹象。她目前60岁,正在接受监测。我们回顾了关于X-ALD在其遗传和病理生理机制、临床表现、诊断、治疗及随访方面的现有知识。这种疾病是一个真正的诊断挑战。早期发现AI和CALD(男性中可能危及生命的并发症)非常困难。对女性患者这些并发症的监测仍存在争议。