Please share. So September is a pretty big month. Its spring.. its childhood cancer awareness month. AND its histeocytosis awareness month. There are many organisations you can donate money that will go towards childhood cancer for the many many children fighting cancer please do it! Unfortunately though there is NOWHERE in AUSTRALIA that you can donate towards histeocytosis. There is no research team, there is no organisation that helps those effected. There is not even an organisation that creates awareness. No studys are done. No progress is made. Government funding? What even is that? Not a cent! Doctors are not educated. Treatment for Liams form of histeocytosis, heamophagocytic lymphohisteocytosis (the biggest baddest deadliest in the histeocytosis category), has a 50/50 survival rate thanks to fundraising mums and the research that was done 20 years ago in Sweden and the ongoing fundraising in America by some families effected, prior to this survival was 0%. this current hit n miss survival rate doesnt include the 2 out of 3 that were not diagnosed until their autopsy. All I ask is that you know that heamophagocytic lymphohisteocytosis (HLH) exists. know what a brave fight my son fought. Understand how lucky he is. Know that HLH isnt preventable. Lack of research and funding is preventable though! Liam was diagnosed in the nic of time, quite litrially on what could have so easily been his death bed. He had the opportunity to at least have a 50/50 chance of survival and fortunately he was in the better half and is still here today. All I ask is that doctors start diagnosing in time. Start treating in time. Start educating, in time. Start research... in time. So this is me starting awareness. Hopefully in enough time so maybe a young doctor will spend a little bit of time to look for the warning signs and give someone a chance to start treatment in time. Liam was turned away from the emergency room on many occasions in the 2 months prior to his final diagnosis. As his mother I knew in my heart this was not just teething or just a virus as a logical person I know a child doesnt go from being a happy healthy baby to being knocked down like Liam was with strange rashes, a fever that wont break (as high as 41.4) fluid retention, unable to move. He stopped crawling, stopped smiling, stopped eating, stopped babbling and eventually stopped crying. Medically; An UNWELL child with; #UNEXPLAINED; Fever Enlarged spleen Enlarged liver Enlarged lymph nodes Low blood counts Seizures (a large portion of HLH cases have it in the CNS as well as the bone marrow) Rash (several types commonly a macrophage activation rash and petechiae. and a rash isnt always present) *****FERRITIN LEVELS**** Tick the boxes? Check for the most common things of course but please CHECK FERRITIN LEVELS as well, A simple quick inexpensive blood test, Nothing besides HLH will raise that level to the levels seen in HLH cases. If you think that a mistake was made in the lab and a few extra zeros were added to the result. Youve most likely got yourself a HLH patient fighting for their lives. Its not rare, just rarely diagnosed.. IN TIME. blue for histeocytosis.
Posted on: Mon, 01 Sep 2014 08:06:56 +0000
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