Myra Ali and her brother, Qassim Saeed, both live with a life-long, debilitating condition, known as Epidermolysis Bullosa (EB) – a genetic skin disorder which causes the skin to blister and tear at the slightest trauma or friction.
Those born with EB are often termed ‘butterfly children’ as their skin is as delicate as the wings of a butterfly.
Myra and Qassim have lived with one of the more severe forms of the disorder – Recessive Dystrophic EB (RDEB) – since birth. This agonising condition takes its name from the tendency of the blisters to leave scars as they heal. This can lead to painful joints, fusion of the fingers and toes, a tightening of the membranes in the mouth and a narrowing of the oesophagus causing problems with eating and swallowing.
Individuals living with EB need highly specialised, complex daily care to help with wound management, treatment of blisters, bandaging and medication.
For 28-year-old Myra and 19-year-old Qassim, from Solihull, living with EB has meant a continuous, life-long regime of treatment and care. They turned to Almond Care for support in 2015, having been recommended by their Primary Care Trust.
Myra explains: “To be honest, our previous care team had been rather hit and miss. There were times when, due to holidays or sickness, the care team simply failed to turn up at all and our parents had to step in to try to and look after us, which was far from ideal.
“Having had such a poor experience before, we were keen to ensure that our new care providers would be up to the job. Arno Senah, one of the directors from Almond Care came out to see us both. He listened carefully to our needs and introduced us to a fantastic care team who have been with us for just over a year now. I am delighted to say they have lived up to Arno’s promise and have never once let us down.”
Qassim said: “We have a carer come in each day, who spends between 6 and 12 hours with us. We also have a two-person care team that comes in once a week to change our dressings. We are so pleased with the team we have in place now. They are confident, meticulous, thorough and also very personable, which certainly helps, given the fact that we are spending so much of our time each day with our carers.”
Explaining how the condition affects their day-to-day lives, Myra said: “The blisters can be so unpredictable and although we have to be careful with anything which can cause friction to our skin, something as simple as swallowing or blinking can cause blistering to our throats, eyelids or eyes. Our bodies and in particular our hands, feet and knees are constantly covered in blisters, which look more like second degree burns and need to be carefully dressed to ensure they do not become infected.”
Qassim added: “Although we try not to let our condition completely control our lives, we live in constant pain and on a bad day it can be difficult to even get out of bed.”
Inevitably, there are times when EB has caused Myra and Qassim to be hospitalised. Most recently Myra was admitted for surgery but her dressings and wound management continued to be dealt with by the Almond Care team who, with agreement from the hospital, provided daily in-patient nursing visits.
Qassim is also due to have surgery on his hand, to try to improve movement in his fingers caused by EB scarring. He explained: “Even though I will be on a plastic surgery ward and the nursing staff there are used to dealing with skin grafts and burns patients, EB is such a highly specialised condition that it has been agreed that my regular care team can come in and visit me each day. It is so reassuring to know that I will have continuity of care and that my dressings will be managed by a team who understand my individual, complex needs.”
Despite living with such a debilitating condition, EB has not held back Myra and Qassim in getting on with their lives. Myra works part-time for the NHS as an Urdu and Punjabi translator, helping patients who face barriers due to language difficulties. Qassim, meanwhile, is in his second year at the University of Birmingham studying Politics with History and is considering a career in either investment banking, law or the Foreign Service.
He added: “Although conditions like EB need a great deal of ongoing, complex treatment, thankfully employers are becoming more enlightened towards disability these days so I am very hopeful that I will be able to realise my ambitions one day.”