We’re pleased to offer a third article in our ‘Atypical HUS around the World’ series, which highlights aHUS in Hong Kong and was written by family caregiver Tara Sam, member of the global aHUS Community Advisory Board (aHUS CAB). No one can better explain the needs and challenges of atypical HUS patients and their families than those who ‘rise above aHUS’ in their daily lives. When the aHUS patients are children, we’d argue that mothers play many vital roles in not only caring for their child but also myriad intangible, irreplaceable ways of keeping together ‘body & soul’ of everyone in that family.
We appreciate and applaud those people who juggle the myriad facets of busy lives, despite caring for themselves or a loved one living with aHUS, yet still make time to help us better understand the ‘aHUS space’ in their country. There’s no one better to explain aHUS issues, lifestyle accommodations, and treatment concerns within a country than those who personally must struggle to find work/life balance in the shadow of a rare disease that is estimated to affect only a handful of people per million population.
After reading this very informative article by Tara, we hope that you too will have a better sense of what’s facing aHUS families in Hong Kong. The aHUS Alliance Global Action team strives to amplify the voices of aHUS families around the world, but we can’t do it without the hard work and advocacy commitment of actual patients and family caregivers. We hope that aHUS advocates in other nations shine a focused spotlight atypical HUS around the world, by sharing their own thoughts and introducing advocacy needs and efforts within their nation – yet can only happen when fine people like Tara Sam make the effort. If there’s no national aHUS patient group in your country, we can help! Learn more about our aHUS R.O.W (Rest Of the World) initiative to encourage and support aHUS global advocacy – Click HERE.
aHUS in Hong Kong (author, Tara Sam)
aHUS was first introduced to me when my second born was diagnosed in 2009. He was 10 months old. We were told it was HUS but when my youngest son was diagnosed, doctors told us it was aHUS. At the moment, there are less than 10 children affected by this disease in Hong Kong. The number of adult patients is unknown.
Both boys were treated with plasma exchange therapies when they had relapses and given immune-suppressant drugs. This treatment therapy helps with aHUS but it kept recurring and there were no preventions. At that time Eculizumab was not available in Hong Kong. Later I joined two support groups; Rare Disease Hong Kong and HKMPS. With their help, Eculizumab was finally listed in the drug formulary for aHUS and PNH patients.
Nowadays in Hong Kong, patients who are diagnosed with aHUS, are prescribed Eculizumab. First the patient has to apply for Community Care funds to see if they can be fully funded by the government. If he/she passes the means test, they will be fully funded or they pay a percentage of the drug price. There are around 20 patients using Eculizumab in Hong Kong (both aHUS and PNH patients).
With help from support groups, I have received calls from parents who are new to aHUS and would like to know more about the disease and how they can help their children with aHUS.
aHUS Hong Kong has a public Facebook page where we share public information about aHUS in Hong Kong. Here is the link:
https://www.facebook.com/aHUS.HongKong
We also have a private group where those affected by aHUS in Hong Kong can connect with each other. Here is the link:
https://www.facebook.com/groups/453274549533462
