Twin: I didn’t know why I was different
LISA Howe knew she was different from her twin sister Amy when she found it hard to smile as a child.
Her eyes wouldn’t fully close, and hermumused to tell her off for leaving her mouth open.
‘‘She would say it’s really rude and not to do it, but I didn’t know why it kept happening.’’
When she was 14 years old, Lisa was diagnosed with muscular dystrophy, a condition she inherited from her father – but her twin sister Amy doesn’t have it.
Now aged 19, whenever Lisa’s knees start aching, she starts to wonder if this is the day she might have to get a wheelchair.
‘‘I find it difficult to do mundane tasks like tying up my hair and lifting the washing basket,’’ Lisa says
Facioscapulohumeral muscular dystrophy, otherwise known as FSHD makes Lisa’s muscles particularly weak and waste away in the face, shoulders and upper arms. Facial muscle weakness often makes it difficult to drink from a straw, whistle, or turn up the corners of the mouth when smiling.
The disease progresses slowly for most people, and can take as long as 30 years to become seriously disabling.
‘‘When I was younger I didn’t call it MD, I thought it was just something I got from my dad like having blue eyes,’’ she says.
Most family members on Lisa’s dad’s side who have FSHD are in a wheelchair – but Lisa says she still doesn’t know what lies in her future.
‘‘It will probably go bad but I’m hoping it won’t,’’ she says.
‘‘My uncle Tony was in a wheelchair before he was 20. My dad, who is 47 years-old isn’t in a wheelchair yet but he’s just recently started getting worse, and one of my aunties is in a wheelchair.’’
Lisa has a support network through the Muscular Dystrophy Association, and her aunty Ronelle Baker is the chief executive.
‘‘I got in touch with others around my age at the beginning of last year. Before I knew other people with it my age I felt kind of lonely,’’ she says.
And being bullied at school because of her illness made her childhood difficult at times.
‘‘People would call me a weakling. My sister is pretty athletic so it made me feel like there was something wrong with me,’’ she says.
‘‘I was quite weak in my upper arms. I couldn’t really throw or catch a ball. In running relays it was hard because no one likes the person who is slowing down your team, but it’s not on purpose’’.
The twins play netball together because it’s a good way to bond and help strengthen Lisa’s arms. CHRIS MCKEEN / FAIRFAX NZ
‘‘We’re both around the same height so I feel like our height intimidates people, which is cool,’’ Lisa says.
The twins say Amy is sporty and Lisa more academic, studying to be an English teacher. Amy isn’t sure what she wants to do. ‘‘I feel good about that,’’ Lisa says.