To calm my anaphylaxis & recover my health

Update 02/04/20:

The crowdfunder's been running just under a year. In that time it's helped for me to pay to see multiple private specialists, have private tests, gone partially towards staying in safe/semi-safe accommodation when possible that didn't make my MCAS go too berserk.  Thanks to the specialists and tests I've ended up with two more diagnoses. I'm incredibly grateful for all this; people have been really generous. There aren't spare funds left in the crowdfunder: it has all gone towards that.

What the crowdfunder hasn't covered is in-depth enough private care to get my MCAS (which is causing the anaphylactic reactions) more controlled, or adequate jaw care to arrest the jaw damage. Without this care my jaw's fallen further and further apart, and damaged surrounding areas.

In-depth MCAS and jaw care and diagnostics for the damage caused by my jaw remain my goals. 

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My name is Roberta. I am a British woman in my thirties. I’m seriously ill, with multiple diseases, and degenerating. I’ve been chronically physically ill 16 years now. I feel like my body’s falling apart around me and I’m trapped living in it. I need your help to get my health back.

My long-term goal is to work as a companion to dying and grieving people; I’m studying towards that gradually, when well enough. However, I am in pain all the time, often can’t sleep through the sheer degree of it, and I regularly go into anaphylactic reactions. https://www.aaaai.org/conditions.../allergies/anaphylaxis

These are not currently well controlled and need more medical help. Anaphylactic reactions run a constant risk of rapidly worsening. I don’t want this to kill me.

I’m used to thinking of myself as very strong. I still think of myself as very strong – alongside being disabled. These are some of my diseases:

Mast Cell Activation Syndrome: this causes my throat and tongue to swell, my skin and internal tissue (inner ears, inner throat) to itch and burn. This can last weeks or months at a time. Hives. Literally dozens of other symptoms. This can happen when I smell bleach or multiple other cleaning products or air fresheners, am exposed to fresh paint, as well as with many medications, many foods, pollution, and toxic mould. I developed the symptoms of MCAS when I was twenty, and had never heard of it before (and had no inkling it would ever happen to me). It’s something NHS doctors rarely test for. In my early thirties, I lived in a very mouldy flat that also gave me carbon monoxide poisoning, and my MCAS symptoms permanently worsened. https://www.healthline.com/health/mast-cell-activation-syndrome
- Histamine Intolerance Syndrome. Histamine is a substance the body produces in an allergic reaction. My body both over-produces it and cannot tolerate it. In test results, my levels of histamine were four times what they should be. As the histamine builds in my body, my reactions can get dangerous.
- Osteoarthritis, including in my jaw.
- Eosinophilic Eosophagatis: (EoE) this is an acute allergic condition. Eosinophils are a kind of white blood cell the body produces to fight infection. Due to acute allergic reactions, they’ve rampantly accumulated in my oesophagus. This gives me serious episodes of choking, food impacting in my oesophagus, which often in turn leads to my oeosophagus tearing. I have both dietary and environmental triggers. This means I can flare even without eating. In bad flares I wake from sleep choking. The MCAS underpins the EoE for me: when one flares, both can.
https://www.aaaai.org/conditions-and-treatments/related-conditions/eosinophilic-esophagitis
- Polycystic Ovarian Syndrome
- Fibromyalgia.
- A severe, IgE allergy to mould. Among other things this affects my lungs.
Multiple doctors have suspected I have an additional disorder in my connective tissue: my flesh tears abnormally easily, my joints dislocate easily.

This is what I need to hopefully feel better:

1. A specific MCAS immunologist skilled in MCAS: I have no safe medicine to take for my MCAS, HIS, or EoE at all at present, because I react to so many medications. My GP wants me to see a specialist who can trial me on different medications. This is urgent. The NHS hospital she referred me to for MCAS turned down the referral. As there are no NICE guidelines for MCAS for the NHS, it can be extremely hard or even prove impossible to access MCAS care on it. Increasingly, MCAS patients are finding their NHS referrals turned down of late.

This means the only help I can currently access is private. The private endocrinologist who diagnosed my MCAS has referred me onto a immunologist who is highly experienced in working with MCAS patients. I was due to see her in late 2019, but was physically too ill to travel to see her at the time of my appointment, so am now due to see her in April 2020 - if I can afford it. The costs will be the appointment: a £300 one hour appointment,  plus the costs of getting there, staying in the area for two nights, and any additional tests she may want. 

2. Continuing to access other private diagnostics and referrals I’m sent for. I’m extremely grateful to have been able to see a private endocrinologist and private allergist, have extensive tests, and have finally been diagnosed with HIS and MCAS by them. I have also been able to consult with private maxillofacial surgeons (jaw specialists). The funds for all of this was raised via crowdfunding. Ultimately, I now want to get to a maxillofacial surgeon specialised in connective tissue disordered patients.  Ideally, I'd also return to the private endocrinologist who treats MCAS patients and continue working with him.

3. Jaw surgery: I’m in constant jaw pain and have been for over 6 years now. My jaw hasn’t had full range of movement for that same length of time. The NHS only agreed to run an MRI of my jaw this year, after a private specialist decreed it crucial. The MRI showed I have a dislocated, thickened disk in my jaw, osteoarthritis through the jawbone and flattening of the bone, and other structural damage through it. As my jaw isn’t fully stable, this can cause attacks of vertigo when my jaw places pressure on my ear. The structural damage triggers migraines that can last weeks at a time. Finally, the jaw damage has caused subsequent structural damage to both my neck and shoulders, both of which need further investigations.


The private specialist maintains jaw surgery is essential to arrest further inevitable jaw degeneration. He has no vested interest in making this suggestion; he’s not even suggesting he does it himself. I’m a high risk candidate for jaw surgery. It's imperative any surgeon operating on me is used to patients with connective tissue issues.  Add in that because of MCAS, sedation doesn’t always work on me, and I’m unpredictably anaphylaxis-prone. A very specialised surgeon is crucial in the hope of surgery being as safe for my body as it can be.


4. A holistically-minded dentist skilled in TMD. Every dentist I’ve seen in recent months says my case is too complex for them. However, multiple TMD patients have recommended a private dentist with a holistic bent who has experience working with TMD patients. Ideally would also have a full assessment and get a Tanner appliance (specialised kind of splint) made up for my jaw. Because the jawbone is badly damaged it can't fully fix that issue. But the hope is it might partially stabilise my jaw, which in turn might help stop pulling my neck, shoulders, spine, out of place.  It'll be £880 total for the initial hour's assessment and cost of the appliance. That cost don't include getting to and from Bristol where that dentist is, or cost of repeat appointments to adjust the appliance. This isn't intended as curative, but simply aiming to get jaw more stabilised. The aim is that it happens as well as jaw surgery.

5. Safe Accommodation: because I now react to a whole bunch of everyday chemical substances and I have both a mould allergy, and toxic mould as one of my MCAS triggers, many buildings in this country get me substantially sicker if I spend too long in them, as my triggers are so commonplace. So, the crowdfunder fund also helps me try to try to stay in safe accommodation for now, continue to see specialists, and ideally not push my health further downhill. The crowdfunder also helps to pay to get to specialists.

6. Additional symptom management: a course of sessions of hyperbaric oxygen therapy, with the hope my body can tolerate it and that it's beneficial. Hyperbaric oxygen has been shown to sometimes help the pain and inflammation of arthritis, and can sometimes help with chronic infections. Chronic infections are a problem for me as my immune system currently isn't doing its job optimally in fighting them off.  A course of sessions would apparently have to be a minimum of 15 sessions as it only works cumulatively. An MS centre 25 miles away will let me use their oxygen chamber at a subsidised cost of £18 per session. The transport for disabled people I'd take to get me there and back is roughly £25 return per session (the relatively high cost is due to the distance).

The NHS has refused to do jaw surgery and only offered to send me to a pain clinic. Every conservative measurement to help my jaw in the last 6 years has failed, and a pain clinic won’t be able to either mend the pre-existing jaw damage, or to halt further degeneration. In fifteen years of illness I've tried incredibly hard to access the medical care I need on the NHS. I believe in socialised healthcare. Ultimately, though, the sheer degree of care and specialisation the complexity of my health picture currently needs doesn’t seem to be accessible to me on the NHS right now and thus I’m presently partially following a private medical path trying to get help.

It's difficult to explain quite how hard living in this world with some of these poorly understood diseases is; there’s a major lack of MCAS awareness still. MCAS is an extremely complex disease. Sufferers go into reaction when their histamine levels become too high. This can be instantaneous upon encountering a trigger, or reactions can take hours or even days to kick on. It all functions around histamine level on a given day, and when it reaches tipping point. I carry emergency epi pens, but existing like this is alienating, terrifying and isolating and I’m desperate to claw any degree of health and normality back. 

I’m resident in the UK, and this where I currently live. However, at points in the past I spent time in warmer, drier climates trying to heal more and find symptom relief, especially as back then I was receiving a lack of medical care that was helping me at home. When I could be outdoors a lot in warm, clean air, it was immeasurably easier in terms of the mould allergy, MCAS, and arthritis. However, I overall remained seriously ill. Ultimately, being abroad would have been in no way affordable to maintain and often felt unsafe whilst alone and ill. I needed ongoing medical help.

I desperately tried to avoid a private healthcare route because it’s so prohibitively expensive without insurance, and my health doesn’t currently allow for full-time work. I’m hoping if I can recover more eventually I can get back to full-time work. Without private care, I plain seem unable to access the medical help I need. I’m unconvinced I can plain survive without appropriate medical care. 

Thank you for reading.


If you’re unable to financially support the crowdfunder but would like to help, sharing it on is much appreciated. If you are able to contribute to it, PayPal is preferable, as it stops GFM taking a hefty cut, and cuts out the period (days to weeks) GFM can take to process donations. I add in all private donations to the total sum of donations received.

My PayPal: paypal.me/mermaidssinging

Additional info for sake of clarity: I live in the UK. This is a crowdfunder run by me (Roberta,) on my behalf. Funds raised pay and have paid for seeing private medical specialists', tests they're referred me for, help getting to them, and staying in safe accommodation. Any additional funds raised in the future will continue to do so. I keep copies of medical receipts.



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This is an abridged and updated version of my crowdfunder story. That hasn’t gone anywhere: I have it saved as of 22/12/19. However, I felt it was hugely dense as was, so have tried to focus on some particularly key aspects.