羅紫羽

羅素西弗氏症
「拇指姑娘」需日打激素 醫生難料成長變數

安徒生童話裏的「拇指姑娘」精靈小巧。
有人用來形容發育遲緩、身形嬌小的罕見病羅素西弗氏症患者。
但現實生活裏,他們還要面對長短手腳、脊柱側彎、餵食困難……
就像紫羽便要天天注射生長激素、面對副作用……直至成年。
媽媽落淚:「能夠維持佢(紫羽)正常營養、正常生長已經好開心。」


Lifewire團隊甫踏進紫羽家中,就看見她鼓着腮坐在沙發上,枱上放著媽媽煮好的午飯,她卻不感興趣,媽媽大感頭痛。唸小三的羅紫羽(8歲),看上如6歲般的小孩。「我睇返姐姐(紫羽)BB時嘅生長曲線,我好感慨,點解佢喐都唔喐呢?」媽媽一邊為紫羽沖營養奶,一邊慨嘆。她比較紫羽和弟弟(2歲)嬰兒時的發育數據,發現紫羽花了一個月才追近弟弟一星期的生長幅度。
「身材矮小、發育遲緩、四肢左右不對稱、脊柱側彎、餵食困難……」羅素西弗氏症這個病名,以兩位發現並公佈的醫生名字命名。約六成患者因染色體基因異常導致發病,四成患者病因不明。外人對紫羽的病不了解,總以為是她揀飲擇食,殊不知是此病症狀,患者容易便秘和欠缺食慾。

Other Causes

Only Two Cases Worldwide
Siblings combat rare disease with smiles

Chen Yau Chun, Chan Ka Wa
Hereditary Spastic Paraplegia

Nonstop Spasms, Sleep Apnea 80 times an Hour
Every night is a miracle for boy with SSADH

Ho Junjie
SSADH

Little Miss Sunshine: “No crying! No pain! I want to get better!”

Bux Hei Yau
Developmental Dysplasia of the Hip

Brothers with Mucopolysaccharides
The mother Just wants to hear her elder son say ‘Mummy’ again

Hui Wai cheung, Hui shing hao
Mucopolysaccharidosis IIIA

Estimated 4 years Left to Live
14-year-old “Dream Chaser” won’t let SMA stop her

Lai Kwan Yi
Spinal Muscular Atrophy

Skeletal Deformation and Scarred Organs
Boy with MPS: “I am not giving up!”

Chu Yat Long
Mucopolysaccharidoses Type VI

DMD Warrior: Your hug carries me through

Chen Tsz Kin
Duchenne Muscular Dystrophy

Treading the line between Life and Death
Aspiring 13-year-old Writer with SMA

Yiu Sum Yuet
Spinal Muscular Atrophy Type 1

Two fingers left – Girl with SMA fights to live to the fullest

Josy Chow
Spinal Muscular Atrophy

Girl with TSC gives back to society through painting

Michelle Lam
Tuberous Sclerosis Complex

Daughter with Rett Syndrome; Rapid Regression
Mom: "Waiting for the 3 little words"

Sze Ka Yan
Rett Syndrome

Forever Smiley Little Angel

Chloe Chan
Angelman Syndrome

At death’s door: “Son, I’ll take care of you till the very end”

Edward Young Kwan Lam
Duchenne Muscular Dystrophy

Boy with Muscular Dystrophy, “Let him live for as long as he can”

Lok Chun-Ting
Muscular Dystrophy and Neurological Disorder

The Spinal Muscular Atrophy Girl: Soaring Against the Wind on Wheels
The Power of Three Fingers: P

Tse Cheuk Yau
Spinal muscular atrophy type 2

Semi-paralyzed girl with a rare spinal glial tumor loves to adventure

Yeung Ka Ying
spinal glial tumor

Rare Disease Boy with Glaucoma Facing Darkness
Mother Overcomes Depression to Illuminate Her Son's

Lam Pok Yin
Rubinstein-Taybi disease (RSTS)

"Rare Disease X File: Girl Becomes Multiply Disabled Over Three Years

Hester Chan
Unknown rare disease

母子同病變 無懼連環醫療失誤 勇抗不治症

Wong Wai Lung
ATAD3A

放棄自殺 小腦萎縮青年:「我選擇生存!」

曾錦源
小腦萎縮症

透視罕見病:黏多醣症(一) 長不大的小飛俠 勇抗退化惡疾

蕭曉進
黏多醣症四型

思想被困身軀 腦癱少女說不出的抉擇人生

陳家琦
徐動型腦癱(徐動型腦麻痹)

肌萎港大畢業生 認病不認輸

蔣衞錕
杜興氏肌肉營養不良症

無力揹水樽 難阻飛翔夢

莫皓翔
脊柱側彎症