Lidia's peanut allergy treatment

Our daughter Lidia is a healthy, happy 15 year old (almost 16) - but she lives with a potentially life-threatening peanut allergy. As a result, she needs to carry with her at all times an adrenaline injector (EpiPen) which might be necessary to save her life if she inadvertently eats any traces of peanut.

The risks of Lidia's peanut allergy

We have managed this very carefully over the years, including not talking about it in a way which scares her unnecessarily. In reality, though, the severity of Lidia’s allergy is such that she could potentially suffer heart failure, suffocation, lung collapse from which she could die or be left with brain damage. Every so often, there is another horrifying story in the news of a peanut allergy sufferer who has inadvertently eaten some food contaminated with traces of peanut. The potential scenarios are terrifying.

Her current situation is certainly dangerous but it is also immensely limiting in that she cannot be 100% safe in any restaurant, friend’s house, group event, aeroplane, theatre, and so on, because it affects her breathing if someone near her eats peanuts - even with ingredients which say they contain no peanuts, there is always a risk of cross-contamination.

Recently while travelling in Poland, she had the tiniest sip of an almond milk smoothie, which must have been contaminated with some peanut. She immediately reacted in a way which was markedly more severe than her previous reactions and continued for many hours. It was a very frightening experience and reminded us that she really is in danger.

New peanut allergy treatment

Recently a new and highly effective desensitisation treatment has become available for peanut allergy, which involves administering tiny amounts of peanut protein in a controlled, hospital setting and then gradually increasing the dosage over several weeks and months of treatment until the patient is finally able to tolerate peanuts. They can maintain this tolerance through a small daily intake of peanuts thereafter. The treatment has shown remarkable results, providing effectively a life-long cure for the majority of peanut allergy sufferers.

But... they have found that the effectiveness of the treatment declines with age and therefore they have decided to make treatment available only for children up to 18 years old.

This treatment is not yet available on the UK's National Health Service (NHS) and won’t be for some time. It is available privately in the UK but at a significant expense: £18,300, which is beyond what we are able to afford.

Lidia's assessment for suitability for treatment

In November, Joanna and Lidia went to Great Ormond Street to meet Professor Adam Fox to discuss Lidia's suitability and to find out everything we need to know. He explained that the original clinical trials included adults up to the age of 55 but they scrapped it for 18+ because the treatment was not only not especially effective, it was also too unpleasant for the older patients. Treating infants is very easy and you could even do it (in most cases) safely at home with approximate doses of peanut butter. But from the age of 5 up it gets increasingly complex and has to be done in hospital with meticulously measured micro-doses of powder.

Lidia’s allergy was confirmed as severe – he wiped a tiny smear of peanut butter on Lidia’s arm just a few seconds and in no time her skin was red, itchy and raised. He then measured the swelling and noted it down. He has confirmed that without doubt, this will change Lidia’s life. He explained that at the moment this treatment is all that is available but that in a few years the treatment will be much more slick and effective, but we can’t wait around for that.

We were shown around the ward where they do the treatment. Day 1 is five hours and Day 2 is two hours. After that it is two hours every two weeks. On Day 1 they start off on a microscopic dose and increase it every 30 mins until the limit of tolerance is reached. The next day they test with a smaller dose for safety and, if all is well, send you home with a dose as the starter dose. The patient takes this amount every day for at least two weeks and then returns to the hospital for the next increase. And so on.

If we can raise enough money for Lidia to be able to start this treatment, within 6 months she could be effectively free of her allergy!

Your support can help us to afford this treatment

We are therefore asking for donations to support us in allowing Lidia to access this life changing treatment for her, before it becomes too late to treat her.

Your kindness and generosity is much appreciated <3

Charles & Joanna

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