Mia Lainchbury, 26, of East Sussex, has lived with chronic conditions for years, but can now have anaphylactic reactions to virtually anything.
A trainee nurse who is “allergic to everything” was nearly killed by a Christmas sandwich – and has needed to be resuscitated on three occasions after anaphylactic reactions in the last three months.
Already diagnosed with a cocktail of chronic conditions, Mia Lainchbury, 26, believes her recurring anaphylaxis – a severe and potentially life threatening allergic reaction – was triggered in September, when she was left struggling to breathe after taking an antibiotic.
Since then Mia, who lives with her insurance manager mum Steph Lainchbury, 51, and telephone engineer dad, Gavin, 55, in Hailsham, East Sussex, has needed CPR three times because of her extreme allergies – once after reacting to the heat of the shower and twice to unknown triggers – while eating a Christmas sandwich landed her in hospital, unable to breathe.
Recalling the incident with the pre-packed festive sandwich on November 14, Mia, whose complex health problems mean she has a feeding tube and seldom eats solids, said: “I spotted this turkey Christmas sarnie in the garage shop while my boyfriend was getting petrol and thought, ‘Oh my God, I’ve got to have it!
“When I sat on the sofa to eat it, I was thinking, ‘Ooh, this tastes so good,’ I was virtually dancing with happiness.
“But, within 10 minutes, my airway was closing and I couldn’t breathe although, luckily, on this occasion I didn’t need CPR.”
After using two EpiPens – emergency medication for extreme allergic reactions – paramedics blue-lighted her to hospital, but Mia is still unsure which ingredient she reacted to.
She said: “What began as a lovely treat ended an hour later with three paramedics and breathing equipment.
“I have no idea of the exact trigger, but I won’t be tucking into a sandwich again in a hurry.”
Mia was diagnosed with asthma in childhood, but also battled irritable bowel syndrome (IBS) for years. This diagnosis was recently revised to a “collapsed bowel,” where part of the bowel operates with a “telescoping action” which often blocks food from passing through.
And she is now sure she also has MCAS – mast cell activation syndrome – a little known condition which is not recognised by all doctors, in which people experience repeated anaphylactic episodes.
She said: “I’ve not been officially diagnosed, because you can’t really get an official diagnosis in the UK.”
According to Mia, who realised she had the condition thanks to fellow sufferers in the chronic illness community who she communicates with online, MCAS attacks could mean she stops breathing at any time, as her airways close when she has one.
So, feeling unable to get the help she needs through the NHS, she is fundraising for specialist help privately and has launched a GoFundMe page with the help of her friend Imogen Horrocks, 22, and hopes to raise £5,000 for treatment with an immunology specialist.
Mia, who has been dating her partner Peter, 28, for four years, said: “Thanks to the money raised so far, I have been able to pay £250 for a video appointment with a specialist.”
She added: “It’s such a relief, as my situation really could be life or death.
“Every time I have CPR, I risk losing mental capacity, too, if the oxygen isn’t reaching my brain.
“So, despite only being 26, I’ve already talked to my doctor about signing a do not resuscitate or DNR order, so if I do end up in a coma, it takes the stress of making a decision away from my family.”
Mia, who also lives with her brother Callum, 23, who is between jobs, was struggling with several chronic ailments, including Ehlers-Danlos syndromes – a group of conditions causing very flexible joints and stretchy, fragile skin, and postural tachycardia syndrome (POTS) an abnormal increase in heart rate on standing or sitting up – when she began having symptoms of MCAS.
Her ill health means she had to leave her nurse training course in 2020 in the second year – something she hopes to resume one day.
While she has had sensitive skin and asthmatic reactions for many years, she has only experienced full-blown anaphylaxis since the end of the summer.
Mia, who has emergency medication to take in case of an attack and carries two EpiPens everywhere, said: “I think it’s been an underlying thing that was triggered by the antibiotic I was taking for a kidney infection – even though I’d been prescribed it many times over about eight years.
“But now it’s become ridiculous – anything can set off anaphylaxis.
“I can’t even burn candles now, as a gingerbread scented one triggered a reaction.”
She added: “Everything I use, from washing powder onwards, has to be totally bland.
“I’m tube fed into my small intestine and very seldom eat solid food.
“And I have what I call my Dora the Explorer rucksack, which plugs me into my feed, which I have with me for 20 hours a day.”
She added: “I call the remaining four hours my freedom hours.”
When she had an anaphylactic episode in October, with an unknown trigger, she went into respiratory arrest and could hear her poor parents performing CPR with a paramedic, as they waited for an air ambulance.
Luckily, when it arrived, they decided she was past the worst and safe simply to be blue-lighted to hospital.
She said: “I could hear my parents talking about their fears that I was dying in front of their very eyes.
“It felt like I was dreaming, as I could hear the paramedics saying I could go at any minute.
“That’s really stuck with me.”
She added: “I really remember this attack, as my granddad was visiting from Spain.
“I started to feel unwell, but stupidly fought it and just kept taking antihistamines, as I didn’t want to cause too much of a fuss.”
On another occasion, around three weeks ago, Mia’s partner had to give her CPR, when her airways closed after she had a hot shower.
She said: “It was horrific for him. He was on his own giving me CPR and I could hear the panic in his voice.
“All I’d done was have a shower, so I think the reaction was triggered by the heat and changing temperatures.
“Then I had another allergic reaction that day in hospital. I was rushed to resuscitation and I was prepped for an induced coma.”
She added: “Luckily they put a nasal breathing canular into my throat and created an airway.
“It’s just so unpredictable.”
Now a respected advocate for the chronic illness community, she says the friends she has made in online groups have been invaluable to her.
She said: “I can’t work now, so I have spent a lot of time on Instagram in these community groups, where I have met people who have given me support.
“This is how I found out about MCAS and I have all the symptoms.
“I have done my best to raise awareness of chronic conditions, to remove the stigma around them and the support I have received in return has been overwhelming.”
She added: “I would literally go as far as to say that, by telling me about MCAS, my friends in these online groups have saved my life.
“I’m hoping the consultant will start an H2 treatment plan. H2 blockers are antihistamines that you can’t get over the counter.
“It’s a stronger antihistamine and targets different cells.”
While Mia has watched her friends getting married, having babies and pursuing careers, her life has been put on hold by her health.
Forced to leave university and move back home when she quit her nursing course, despite dating for four years, her health remains too unstable for her to find a flat with her boyfriend.
And she admits that, despite her deep gratitude to her loved ones who support her, she can find her restricted life gets her down.
She said: “Sometimes I look at all that’s happening to me and how close I keep coming to dying and feel totally overwhelmed by it all.
“But trying to raise awareness of chronic illness has given me a purpose.
“And discovering I have MCAS and that there is treatment available for it, if I can raise enough money to seek it out privately, has also given me hope.”
* To donate to Mia’s GoFundMe go to https://www.gofundme.com/f/t9fkju-please-help-save-my-bestfriends-life?utm_medium=referral&utm_source=unknown&utm_campaign=comms_gfm+t9fkju-please-help-save-my-bestfriends-life
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