Santa and his Christmas elf has been visiting the children of Hellingly and Hailsham to raise funds and awareness for those living with Mast Cell Diseases.
The personalised doorstep visits raised an amazing £597 in aid of The UK Mastocytosis Support Group. They were organised by Charlotte Lane, trustee of the charity and mother to Olivia aged 6, who has been living with Mastocytosis since she was 6 months old and it has been confirmed she will never grow out of the disease.
The disease affects her skin, lungs, bowel, bladder, joints, bone marrow and liver combined with respiratory issues that can be triggered by airborne readily available home cleaning chemicals, skin contact, ingestion or something as simple as changes in weather conditions.
Olivia’s has to take fourteen different sets of medication on a daily basis, with a further admission to hospital once a month for treatment in order to help control symptoms and assist in preventing reactions that can inadvertently cause anaphylaxis.
Minor reactions present themselves as loose bowel movements, wheezing and extensive flaring of her skin lesions. Olivia has also suffered many severe allergic reactions with the heat being one trigger. This results in facial and arm flushing, acceleration in heart rate, abdominal pain, vomiting, drop in blood pressure, reduction in oxygen saturation, loss of control of bowel and unconsciousness. She has also had an anaphylactic reaction to an unknown trigger which in itself presents difficulties as the family live in worry that anything could cause her to become critically unwell.
The UK Mastocytosis Support Group works to promote the well-being of people with Mast Cell Disorders including Mastocytosis, Mast Cell Activation Syndromes and Hereditary Alpha Tryptasaemia.
The charity educates people with Mast Cell Diseases, their families, and medical professionals about these conditions by sharing best practices in medical and self-care. They advocate for the needs of patients and their families within the healthcare system, promoting access to knowledgeable care and working to ensure access to medications.
Olivia’s family have been offered a huge amount of support from The UK Mastocytosis Support Group since her diagnosis which has helped them to source experienced doctors close to home, whilst also offering the family support and understanding during challenging, uncertain times.
Mast Cell Disease patients will vary in their presentation—but what they have in common is that they will often have symptoms in multiple body systems where mast cells are present.
Living with a Mast Cell Disease can feel like living in a minefield, because so many “normal” things, like foods, or washing powder or a hot day can cause misery. Staying safe by avoiding these triggers can make some people with Mast Cell Diseases feel quite isolated.
Please visit www.ukmasto.org should you wish to learn more about these conditions or support the charity further.
