Hello, my name is Emma, and in July I was diagnosed with Mast Cell Activation Syndrome (MCAS) and Dysautonomia/Postural Orthostatic Tachycardia Syndrome. Since diagnosis, I started treatment with highest dose medication 720mg fexofenadine, 40mg famotodine and 10mg of monteleukast daily, but my condition is severe and symptoms have worsened that my doctor says I need the last resort treatment of 2x Xolair injections monthly for 6-9 months, alongside the current medication.
My symptoms started at the beginning of October, initially with swelling, debilitating migraines, exhaustion, shaking and tachycardia. I was then getting very sick, COVID, reactivated EBV, flu, and shingles. Initially doctors thought I might have lymphoma or leukaemia, then lupus. After each virus, I would get more swelling, hives, fatigue, shaking, low blood pressure and high pulse, migraines, flushing, brain fog and more and these symptoms would worsen as time went on.
Doctors couldn’t figure out what was going on despite this interfering in my life and work. They’d prescribe a variety of medications, and despite relying on the NHS with prescriptions being £9.95 each, multiple new prescriptions every couple of weeks was adding up.
By the time Spring started and pollen season was happening, I was getting worse. My blood pressure would get even lower and my pulse very high, my face and lips would swell, I’d get faint, nauseous, really hot, hives or rashes, joint pain, muscle pain, worsening brain fog, severe migraines, absolute exhaustion.
As summer rolled in, especially with the heatwaves the symptoms continued to get worse and by now I was experiencing episodes where my breathing was compromised and swelling was also affecting my throat and tongue. I was sleeping in ice packs as the migraines felt like my skull was cracked. My whole body would be inflamed and swollen and very hot to the touch. I’d have sudden reactions and anaphylaxis where I couldn’t breathe and I felt like I was being strangled. I had lost 20lbs since summer 2024 and a lot of hair at this point.
When I went to the NHS doctor again, GP’s were unavailable and I was seen by a paramedic who said I had idiopathic anaphylaxis. He made an urgent referral to an NHS specialist and stressed I need to call an ambulance.
I had another severe reaction a few days later, the photos show during the reaction where my face is swollen and flushed with an ice pack, I was having the low bp, high pulse, swelling, mini blackouts, difficulty breathing, nausea, feeling faint, and the fallout of the reactions would wipe me out for much longer. The other photo is two hours after where I very cold, grey, my face looks normal-shaped. Another reaction a couple days later had these symptoms and also my arm was essentially seizing/ involuntary jerking.
I made another appointment with the NHS doctor, and as no doctors were available I saw the paramedic again, but on my way there I had a reaction in the cab and the paramedic sent me to A&E. A&E couldn’t do much, but A&E doctor said I need to see the specialist. The specialist informed me the soonest appointment as a result from the urgent referral is not until autumn of 2026!
At this point, my quality of life had declined, I hadn’t been able to see friends in months, my cognitive function was compromised from the brain fog and exhaustion, impacting work and even my ability to draw. I wasn’t able to exercise, or do the things I normally do to try and get better or maintain my mental wellbeing.
I was aggressive in my attempts to get this solved, and to expedite my NHS specialist appointment. At this point, I was scared, as these more severe episodes got to the point I was scared for my life, and I have some masterpieces I want to paint and a Sparrow dog to love and feed.
As my condition seemed to reliably get worse as time went on, I couldn’t rely on the NHS referral for the specialist. I pursued the private route, and found one of the best Allergy specialists in the UK. It was validating to receive a confident diagnosis and gain understanding of what was going on. From the blood tests, it turns out that I have 0 allergies and normal IgE levels but high Histamine levels, meaning my immune system is overreacting and attacking things as if I have allergies. Each reaction and the fallout from the reaction has essentially been stoking the MCAS fire alongside stress, heat and humidity, chemicals, viruses and dysautonomia. I need to stabilise my mast cells.
I was hoping the initial treatment would be enough, some symptoms lessened but others broke through the high dose of meds. I’m now at the point that when I eat food, even a rice cake, my body thinks it needs to attack. Cleaning a mug to make a cup of tea is exhausting, going to the pharmacy is risky if someone is wearing strong perfume. It’s been three weeks of struggling to eat, I rely on electrolytes and tea with honey as I want to avoid malnutrition as that would compromise my immune system and keep stoking the MCAS fire.
After over a month of the high dose of medication, I am clinically approved to do the last resort treatment. I was hoping to avoid this as I cannot afford it and the NHS is not able to do this right now despite trying to keep pushing to expedite the specialist. I will need 300mg of Xolair each month; Xolair will have a gradual result as it builds up in my system to suppress my mast cells to lessen reactions so I can recover. I will hopefully be able to taper down some of the oral medication. After the Xolair treatment, my doctor said I should be able to manage my condition much easier and it wouldn’t get so out of control to be as severe as it is now.
Each month l have to pay a pharmacy £705 for the Xolair, £280 for the doctor and £90 for the administration of the medication, a total of £1075 per month, for 6-9 months, which is nearly my rent.
As this condition has gone on, I’ve been financially strained with prescriptions, supplements, cabs for hospitals, food that doesn’t trigger reactions etc. I haven’t been able to paint as much or as easily to supplement my income due to being so unwell. And most people who know me know I push through things and work, and have been self-sufficient. Unfortunately my health has been so compromised, that I have come to a sobering realisation that is genuinely a test to my ego, that I need help. I cannot afford a loan as I am not in a position to pay it back. And I really need to get better, and I really want to be able to eat safely. I have been doing everything in my power to get better, to the point I’ve been isolated at home, as I live alone, avoiding all triggers, to try and give my body a break. I need to get better to work, and to be the friend my friends.
This condition has really changed my life, it has scary, and without treatment, it will continue to get worse. It’s already been life threatening. I’ve been scared to ask for help but I’m at a point that this condition is scarier.
Any bit of help would mean the world to me to get my health stabilised and to be able to have my life back. I am so grateful for your time to read this and for your consideration, thank you xx
Organizer
Emma Sargeant
Organizer
England