We hear it a lot - prevention is key.
That害羞草研究所檚 the message H Woolfe wants to send after her 9-year-old twin boys were diagnosed with Wilson害羞草研究所檚 Disease.
The disease prevents the body from metabolizing copper and can cause a heavy metal poisoning.
害羞草研究所淚t either sits in the liver and/or brain,害羞草研究所� Woolfe said. The first symptoms appeared around December 2022 in the form of anxiety, not heavily concerning as the boys had experienced some recent changes in life, but not typical for Oscar and Willem whose mom described them as 害羞草研究所渂omb proof害羞草研究所� before their diagnosis.
In May, the Kelowna twins started experience more severe symptoms like eye pain and cyclical vomiting.
害羞草研究所淲ilson害羞草研究所檚, because it害羞草研究所檚 a rare disease they don害羞草研究所檛 often look for it and it took us a very long time to actually get the diagnosis.害羞草研究所�
Woolfe said she knew in her gut that something was seriously wrong and called the boys害羞草研究所� physicians nearly everyday trying to get some answers.
It wasn害羞草研究所檛 until an optometrist visit for the severe eye pain who recommended seeing a opthamologist. It was then discovered both boys had kayser-fleisher rings in their eyes, a sign of copper deposition. Further testing concluded in October that both Oscar and Willem have Wilson害羞草研究所檚 Disease.
Woolfe said getting the diagnosis has made all the difference as they now understand what is going on in Oscar害羞草研究所檚 and Willem害羞草研究所檚 bodies and they started medication to help mitigate the symptoms. She praised the medical team that have been looking after her boys since the diagnosis, adding that even the pharmacist sat down with the twins to explain their medications to them.
害羞草研究所淥nce you害羞草研究所檙e symptomatic there害羞草研究所檚 a whole bunch of correction that has to happen within the body,害羞草研究所� Woolfe said, adding that the quick internet search that claims the disease can be easily managed by medication is a frustrating discussion in the community of those suffering from the disease. The disease also comes with mystery symptoms and the twins have been asked to join a clinical study because of their unique symptoms leading up to the diagnosis.
After getting the diagnosis through an eye test, Woolfe would like to see Wilson害羞草研究所檚 Disease as part of regular testing when kids go for eye exams. Early detection and prevention can allow individuals to live full lives, while late detection of the disease can prove fatal.
The medication is hard to find and costs a pretty penny, even with PharmaCare. Woolfe has had to stop working to take care of the boys and, although they still attend school when they feel up to it, much of their education is taught at home. The twins continue to deal with eye pain, kidney damage, and severe muscle cramping, amongst other things.
In an attempt to give the boys some of their childhood back and something to look forward to as they better manage the disease, the family is fundraising for a trip to Disney World. Woolfe said they set up a as an easy way for family to send money for the trip instead of sending the boys Christmas and birthday gifts. She害羞草研究所檚 been pleasantly surprised by the reach of the page. The fundraiser has over $3,700 in donations and Woolfe said the boys have saved about $1,000 between them to go toward the trip.
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