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Superficial Siderosis in New Zealand
Superficial siderosis (SS) of the central nervous system is a rare brain disorder resulting from chronic and repeated, slow haemorrhaging into the subarachnoid space. Read more about superficial siderosis.
Some seven people diagnosed with SS are known to exist in New Zealand, and another now resides in Australia. It is also believed that there are at least another two cases, however they have so far not been contactable. Those known with the disease live in Auckland (2), Picton (1), Westport (1), Christchurch (2), and Oamaru (1). The Australian ex-kiwi male, in his late 40s, is from Taranaki. One 54-year old Auckland man died as a result of the disease's complications during 2009. Of the New Zealanders, only one is known to retain perfect hearing, which is quite uncommon (only 5% of sufferers ), but he does suffer from many other side effects.
During November 2010 the sole female member, Angela Hodgson of Auckland passed away due to SS complications. She was 42 years old. Angela created an unusual statistic being the only known female in this country. International SS medical research figures state 2.75 males to every female diagnosed with SS. Prior to Angela’s death the New Zealand ratio was 7:1, but it is now 7:0. This is very hard to believe, and one wonders why this should be the case.
Dave Hill of Oamaru, diagnosed with SS in 2004 at the age of 52, operates a weblog and as a result of huge interest from survivors around the globe, he formed an international support group with currently more than 80 members in Belgium, Italy, Scotland, Ireland, England, USA, Canada, Central America, South Africa, Australia and New Zealand. A monthly newsletter is published on the blog and serves to assistance members as they battle with the daily distractions thrown at them by the disease. The group also carries out surveys amongst the membership which are made available to world-wide research scientists.
Membership of the support group is quite varied. The youngest is now a 10 year old boy, and two ex-General Practioners plus a Professor of history were all struck down with the disease over the past months.
Dave has received numerous jocular comments about the condition of the drinking water in New Zealand, referring to the large number of diagnosed SS survivors in the country, especially compared to the huge population of the United States with its only 40 known SS survivors. In actual fact, the large number of diagnosed sufferers in New Zealand is most probably due to the dedication of a very strong, knowledgeable group of neurologists and radiographers spread throughout the country. This is in complete contrast to the experience related by some overseas SS survivors, most of whom say they are poorly attended to, and some speak of continually trying to get their condition diagnosed, often for years, let alone have it addressed.
Several neurologists and radiographers at Dunedin Hospital, a medical training facility for Otago Medical School, have commented to Dave that they know his brain quite thoroughly, as his MRIs are often used in training at the school. This is actually reassuring to hear, and in fact helped a second SS diagnosis at the hospital to be quickly made just three years after his. The 35-year old man concerned, now resides in Christchurch.
It expected that with time, the number of diagnosed SS cases will greatly increase, both within New Zealand and around the globe.