A Belfast woman says that her "life is being destroyed" by a rare condition that makes her feel severely ill every day.
Alisa Rose has been diagnosed with Mast Cell Activation Syndrome, a condition that can leave her constantly in pain and nauseous as her body believes that it is on the brink of having an allergic reaction, even though she is not.
This is caused by a build-up of histamines in her body that cannot be broken down naturally.
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She first started experiencing the symptoms of the condition in 2016, around the time that she began peri menopause. These included fatigue, headaches, increased anxiety, joint pain, nausea and diarrhoea, however they were all treated individually at the time and not thought to be connected.
These symptoms got worse over time and Alisa says since 2020 she has felt ill every single day. After contracting Covid in January of this year she says that her condition has deteriorated further and she recently had to go to five times in one week as she has been in so much pain.
Speaking to Belfast Live, Alisa said she is desperately trying to find someone who is able to treat her condition and that there are only a handful of doctors in the UK that are specialists in it. But none of them are in Northern Ireland and some do not see patients from here.
Alisa said: "This condition is destroying my life and there is not a day that goes by that I am not feeling very ill.
"I believe that it started in 2016 when I began peri menopause and got progressively worse over the years, but since 2020 it has been unbareable and after having Covid at the start of the year I feel like I am barely able to function.
"I paid privately to see a top menopause specialist in London who prescribed transdermal body identical HRT and I felt better for a week. When I started to react badly to it 2 blood tests were taken and sent to the UK as he suspected that I have MCAS and the results came back that I do.
"Despite changing dosages, I cannot tolerate HRT until my MCAS is under control but there is no one here who can treat me.
"I have extreme fatigue, frequent headaches, vertigo, constant brain fog, shaking, joint pain, nausea and diarrhoea. MCAS affects your mental health too and I have debilitating anxiety which affects me all day every day. It even wakes me from sleep.
"At the moment all I have is over the counter antihistamines which of course are not nearly enough. There’s no point even going to A&E as they don’t know much about the condition although I have had to go for my symptoms frequently, 5 times in 1 week recently.
"I thought when I finally got a diagnosis I would get help but there’s nothing. I have no quality of life and I don’t know how I can go on like this. It is getting to the point that I am afraid I will become suicidal. I need hope and that is why I’ve made this appeal for specialist help not just for me but for my son who has special needs and my rescue dogs who need me.”
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