Jackson- Langerhans Cell Histiocytosis & Diabetes Insipidus

Jackson's story for Rare Disease Day 2014

Our son Jackson first showed symptoms at six months. He had painful papule rashes in his groin and under arms and disgusting weeping wax from his ears. We saw numerous GP’s.

When he was 12 months old, Jackson was referred to see an ear, nose and throat doctor who took a biopsy from his ear and sent it to P.M.H.

At 18 months old and after blood tests, another biopsy, X-ray and MRI scans Jackson was diagnosed with multi- system Langerhans cell histiocytosis. This meant it was in his skin, blood and bone. His scans show a four centimetre hole in his jaw. He was treated with steroids and chemotherapy.

Jackson was re-diagnosed with LCH in January 2013. This time it had damaged his pituitary stalk so he was also  diagnosed with another rare condition called Diabetes Insipidus which means his body cannot produce the hormone vasopressin. This hormone controls the regulation of body fluids and urination so Jackson has a synthetic hormone twice a day to be able to stabilise his hydration. He will need this for the rest of his life.

This has been a five year journey so far and we have witnessed a lack of support and recognition of rare diseases especially in the initial diagnosing stage.

The more we talk about it, the more people can understand and learn.

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1 Comment
  1. As an adult I know exactly what you are saying. I became ill at age 25 and it took doctors 3 years to find out what was wrong with me. By this time more and more of my body was being affected by LCH. Once diagnosed I spent 6 year on chemotherapy, it has now been 10 years since my last chemo treatment, I now live with the side affects of the chemo & the disease, but I am disease free.
    We do need more awareness for the disease so that it can be diagnosed more easily..
    Good luck Jackson and I hope you remain healthy.