Seven families affected by Histio have joined together and formed seven teams to organise a John O Groats to Lands End (Jogle) relay. Travelling by either bike, foot or skate during the month of September ...."Histio Awareness Month".
Isaac was diagnosed with Langerhans Cell Histiocytosis in April 2016 aged 2.
Isaac has always been an active little boy and we had no idea he was poorly until he landed on his arm when bouncing on the settee in March this year. We took him for an xray at the local hospital and they picked up an abnormality. After several hospital visits and referrals, and several tests later, including an MRI and bone biopsy they diagnosed Isaac with LCH.
Luckily for us, Isaac currently only appears to have bone involvement which has resulted in lesions within his arm and skull. He is on medication which seems to be working and we are keeping everything crossed that he will be one of the lucky ones that escapes chemotherapy (the usual treatment for LCH). He visits Manchester Children's Hospital every few weeks to see both the Orthopedics and the Oncologists to review his progress and treatment plan.
Fundraising for the Rare Histiocytosis Registry & Research Projects 2017.
We are delighted to be participating in the first ever ‘Histio JOGLE’ to assist in raising the £20,000 required to fund the ‘Rare Histiocytosis Registry and Research Projects 2017’. The registry will collate the details of all Histio patients in the UK and will allow medical researchers and other professionals, quicker and easier access to data on patients. This will in turn result in quicker diagnosis, and professionals can share treatment protocols.
Histiocytosis is a term used for a rare group of diseases, characterised by increased numbers of white blood cells called histiocytes in the blood and tissues. In all forms of histiocytosis , these cells, which are part of the protective immune system, begin to attack the body.
LCH is an unusual condition, it has some characteristics of cancer, but unlike almost every other cancer, it may spontaneously resolve in some patients while being life threatening in others. With LCH, histiocytes called Langerhan Cells, which are normally found in the skin, may spread to many organs and damage them. The symptoms vary depending on which organs are affected, but skin rashes, destruction of bone, breathing problems and damage to the brain are common. LCH can occur in both children and adults and it is usually a chronic disease and may cause severe disabilities due to brain damage. Lifelong follow-up is required because of the possibility of late recurrence or late complications. About 50 children in the UK are diagnosed with LCH each year and it is more common in boys than girls.
HLH (Haemophagocytic Lymphohistiocytosis) most commonly affecting young infants and children is where a virus infection triggers another type of histiocyte, the macrophage, to become overactive and attack the body. Red blood cells and other white blood cells are engulfed and destroyed by the macrophage and the sufferer is unable to fight infection. HLH is an acute and life threatening disease.
There are other rarer forms of histiocytosis related to both LCH and HLH and very rarely malignant histiocytosis occurs, which is a lukemia like disease of histiocytes.
Those suffering from Histiocytosis face an uncertain future as there is very little understanding about how best to treat it and the government does not fund research for rare diseases. That is why we need to raise as much money as possible as the Histiocytosis Rare Disease Register which will provide a useful tool for understanding and treating this rare group of diseases.
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Please find info on Team Isaac's legs and participants:
John O Groats to Inverness.....Paul Whyte and Stephen Heyworth (Alf) supported by Mike Kelly (Dobson).
Inverness to Balloch.....Kerry Dillon-Daley and Martin Daley
(Balloch to Glasgow Team Killy)
Glasgow to Gretna.....Lee Royle (Rocky), Richard Ramsden (Ramo), James Gregson supported by Carl Melland.
(Gretna to Kendal Mike Cheshires Team)
(Kendal to Chester Team Astro Jack Daley)
Chester to Cat and Fiddle..... Deirdre Stables and Julie Slack
Cat and Fiddle to Whaley Bridge ....Kate Snodgrass, Ian Snodgrass, Linette Rushton, Sara Pettett, Debbie Whyte, Nick Whyte, Shannon-Kate Thomson, Simon Fox
Sunshine Nursery......including Rachel Jones and Isaac Royle.
Whaley to Combs......Kath Thompson, Shannon-Kate Thomson, Lauren George, Lewis George, Erin George, Becky Ball, Jackie Herling, Mark Cutts, Nikki Hancock, Sara Pettett (Possibly Heidi and Isaac Royle)
Combs to Parsley Hay......Anna Aspinall, Chris Aspinall, Caz Whittle, Jac Grant, Amanda Skeldon, Helen Gilbert,
Parsley Hay to Ashbourne......Simon Fox, Lee Royle, Sara Pettett and maybe a Whyte or two
Ashbourne to Repton.........Tony Worthington
(Repton to Tamworth.....Team Bonnie)
(Tamworth to Birmingham...the one and only 'Histio Girl')
Birmingham to Bristol .......Debbie Whyte, Nick Whyte and Elaine Whyte supported by John Whyte.
Bristol to Newquay ......Ian Clucus
Newquay to Lands End....Lucy George, Mark George, Sam Evans, Neil Evans, Gene Cowley, Jamie Cullen, Ste Boothroyd, Laura Slater and Jill Pierre.
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