Influencer Dominique Brown Dies of Food Allergy at 34

Anaphylaxis needs to be taken much more seriously than it is.

Epi is great - but it’s only buying you time. Biphasic reactions can be lethal.

Also - especially if you have MCAS - make sure to learn the various ways anaphylaxis can present.

It doesn’t always involve the airway.

This was (in my opinion) a preventable death. It was an egregious disregard for Dominique’s life to suggest she take photos before going to get medical care.

Even “if” you think your reaction isn’t progressing quickly - it could change in an instant.

You should never delay medical attention

If you’re new to anaphylaxis and/or new to MCAS - I highly recommend learning the various ways it can impact your body.

I didn’t realize I was having anaphylaxis the first time it happened to me. I thought it was the flu.

I had diarrhea & vomiting, sore throat, fever and bone pain.

I finally went to ER after three days of suffering not because I suspected anaphylaxis - but because my throat was so sore I couldn’t keep fluids down.

The triage nurse took one look in my airway, stabbed me with an epi pen and whisked me into a code room.

My “sore throat” was actually swelling

My vomiting and diarrhea was classic GI anaphylaxis - and I was also having significant cardiac symptoms.

Thankfully I got medical care in time - and the team who treated me explained what to look for in the future.

Many of us think of wheezing, hives, hoarseness and throat closure when we picture an anaphylactic reaction.

In reality - it can spare the airway AND the skin. It can impact your gut, your heart and your reproductive organs.

In fact - my doctors can actually tell when I’m going into anaphylaxis by the changes in my EKG (highly recommend reading about Kounis Syndrome if your MCAS causes cardiac issues)

When it comes to anaphylaxis - treat early & get to hospital. Make sure you always have an epi pen (or two) with you and check regularly to make sure they haven’t expired.

If you’re unsure if you’re in anaphylaxis - go to ER to be certain.

Had I waited much longer my throat would have closed

Lastly - take people’s allergies seriously. In MCAS we don’t always know what the trigger will be - but when people do know what they’re allergic to - we need to be cautious and ensure they aren’t exposed

If we took allergies more seriously - Dominique would still be with us

For more on idiopathic anaphylaxis and the unique ways it can impact people with MCAS - check out my introduction to MCAS article: https://www.disabledginger.com/p/when-youre-allergic-to-everything

For more on Dominique’s death: https://www.usmagazine.com/celebrity-news/news/influencer-dominique-brown-dies-of-food-allergy-at-age-34/

When I was first diagnosed with MCAS I thought “a condition I can control!”

I genuinely believed that since there were clear & obvious triggers - I could put in the work, overhaul my life and be free of attacks.

When a patient plans - mast cells laugh.

I threw myself into research trying to learn how to adopt a low histamine diet, clean my air and change my body care and cleaning products.

I (falsely) assumed that if I made enough changes - sacrificed HARD enough - I wouldn’t have to deal with flare ups.

It was exhausting. Many of the changes DID help. A low histamine diet, cleaner air, a proper med and supplement schedule and non toxic cleaning products all helped to reduce my overall “bucket” so that my symptoms were less severe.

The problem was - I continued having attacks. From minor attacks to full blown anaphylaxis - no matter how much work I put in the attacks didn’t stop.

It was incredibly frustrating - and I began tracking everything I ate, used or did in an effort to find patterns.

In the end I realized that sometimes - there are no answers. “Putting in the work” doesn’t guarantee you won’t have attacks.

It’s a help - and we should do whatever we can to minimize our symptoms - but chronic illness (and especially MCAS) doesn’t care about your plans.

I had to learn to let go. Constantly blaming myself, over analyzing every situation and trying to nail down exact triggers was exhausting me.

It wasn’t helping my physical health and was destroying my mental health

At a certain point - we have to accept that chronic illness can be wildly unpredictable - and flares are NOT our fault.

Setbacks happen - and the best thing you can do is give yourself grace and remember that the pain WILL pass.

This applies to Covid as well. I see far too many people who are covid cautious being blamed for their infections. Being grilled as to what their exact precautions were as people try and exploit a perceived weakness somewhere.

This isn’t helping.

If you’re masking and doing everything you can do to avoid covid - you’re doing a great job. If you got infected anyways - that’s the fault of our institutions and governments who’ve allowed the virus to run rampant and encouraged people NOT to take precautions

Just like we have to let go of trying to find every possible trigger for our chronic illness - we have to let go of the blame when people get infected with Covid.

Blame, shame and guilt aren’t helping anyone - and they aren’t good for your health.

To be clear - “letting go” doesn’t have to mean giving up. It doesn’t mean you stop trying to improve your health or stop mitigating for COVID.

It simply means you stop fighting the reality that you’re sick. You lean IN to the conditions and try and find ways to accommodate

It’s a difficult thing to do. I’m still having to work at it every single day. But it’s worth making the effort.

Society, HCWs and even friends & family can be cruel to those with chronic illness - we don’t need to be cruel to ourselves.

Which brings me to my third and final article in my series on living with MCAS - Learning to Let Go.

This post explains how I learned to be kinder & gentler with myself and accept that setbacks WILL happen and they’re not my fault:

https://www.disabledginger.com/p/learning-to-let-go-how-to-accept

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At ER with a POTS flare - heart rate is 180 at triage.

Nurse: “Are you fighting with your boyfriend sweetie?”

Me (somewhat indignant) “I don’t have a boyfriend. I have POTS.”

Doctor: “Single? At your age? How come? You don’t want to be married?”

This is misogyny in medicine. I had a cardiac issue which is clearly documented in my chart/medical history.

I showed up alone - having been brought in by paramedics after fainting from low blood pressure and high heart rate.

There was absolutely no reason to make it about my marital status, boyfriend or lack thereof.

Can you imagine if a man showed up at the ER after passing out and his heart rate was 180? Do you think for a second they would ask if he was fighting with his girlfriend?

It’s a rhetorical question - since studies have shown that men are treated faster and more seriously in healthcare settings.

POTS is particularly challenging because it can make a patient appear anxious. It causes high heart rate, shortness of breath, sweating and dizziness. It’s all too easy for healthcare workers to see those symptoms and psychologize the patient.

That was my reality for YEARS. Going to the ER because I had passed out somewhere - and being treated as though I was simply hysterical. Given IV fluids to placate me but never referred to cardiology and properly worked up.

Even once I finally received a diagnosis (more than a decade later) I would continue to encounter hurdles like the one described above.

We must do better. Patients deserve to have their issues taken seriously and their health protected. If you don’t know what’s wrong - admit it. Refer them to someone else. Don’t slap an “anxiety” label on them and send them on their way.

The amount of times I was either gaslit, misdiagnosed or mistreated in healthcare settings is a huge part of why I decided to start advocating. I want to raise awareness about the conditions I have so that patients might better recognize the symptoms within themselves.

I also want to try and change the culture of medicine. The default should be to believe patients. To protect them. To wear a mask around them during an airborne pandemic. It should NOT be to pry into their personal life, psychologize and dismiss them.

Now that I know and understand what’s wrong - I live my life upside down! Almost all my writing is done horizontally and/or with my legs up the wall - because it’s the only way I get enough blood flow to my brain.

POTS can be incredibly debilitating - but there is hope. Treatments and lifestyle modifications CAN help.

I’ve just finished part one of a three part guide into all things POTS/Dysautonomia. It’s my hope these articles will help patients lean into their condition, adapt and accommodate it so that they will suffer less than I did.

https://www.disabledginger.com/p/living-life-upside-down-an-intro

"You should pray more - your disabilities will get better"

We've probably all heard this. That you can pray away an illness (or pray away the gay).

It's hurtful and far too common.

What I'm not used to is being told my illnesses are a "spanking from God."

Yes someone actually said this to me. They compared it to the way you might spank a child who runs out into traffic - you're training them that their behaviour is dangerous.

Apparently l've done something in my life bad enough to be compared to running into traffic.

I have no idea what it could be - but l've found that people who make these awful remarks generally don't care to get to
KNOW you. They want to preach, judge & blame.

They want to believe disability is a moral failing. A sin. So if you're disabled - you must have been
"bad".

For anyone who needs to hear it - your disability is not your fault (and neither is your sexuality for that matter). We did not choose this.

We've done nothing wrong and we don't need to be "corrected."

If someone suggests you can pray away your illnesses - that person is living in serious denial with a big heap of ableism on the side.

It's ironic that these comments almost always come from religious people who preach compassion and tolerance - while giving us anything but.

They tell themselves they've taken the moral high ground - when in reality they've sunk to the lowest low - blaming someone for something they have absolutely no control over. Making us feel broken and treating us like damaged goods.

It's also predatory to provide false hope that simply praying harder (or trying harder) will "fix you". It won't.

I don't care what religion you ascribe to - it's never ok to tell someone they can simply overcome being disabled. That's not how it works.

If you believe this - keep it to yourself. You're not helping anyone when you make these cruel views public.

Maybe ask yourself this... if you get hit by a car tomorrow and are left permanently disabled ... was God punishing you? What did you do wrong?

Or is it possible that when it happens to you (or your children) you will believe it was simply a random turn of events and expect compassion from others?

If you pray to get better and you don't - will you accept that? Or will you assume you too have been
"bad"?

My ask of people tonight is to consider that anyone can become disabled at any time. Health is not a guarantee and disability is not a punishment or a moral failing. It is a part of life.

We deserve equality, compassion and love the same as everyone else.

It's NOT loving to suggest it's someone's fault ...I don't care what mental gymnastics you've done to justify your remark. I don't care if you're trying to "save" them.

Love is listening, helping where you can & learning about what we're going through. Love is being an ally.

Love is not blame, condescension and moral superiority.

Next time you think about judging someone - try to instead ask them how you can support them. You might be surprised what you can learn by being open and compassionate.

To anyone who's heard similar remarks - stay strong and hold your head high.

Know that it's the person making the remark who's showing themselves to be wanting. Know your illnesses are not your fault.
Know you've got a whole community behind you.

PSA for Long Covid folks experiencing mast cell issues for the first time - anaphylaxis is not JUST airway issues. Anaphylaxis can impact all major body symptoms & you can be having an attack with NO skin or airway involvement.

My anaphylaxis is almost always cardiac & GI.

I find that many people (including some HCWs) still associate anaphylaxis with throat closing and hives/rashes. While that may be the typical presentation (especially for food allergies)… patients with MCAS are anything but typical.

My very first anaphylaxis experience started with a sore throat & flushing but no noticeable breathing difficulties. I had terrible diarrhea & stomach cramps, a very low pulse & was pale and woozy. I chalked it up to a bug and tried to rest it off.

I didn’t go to the ER until more than 48 hours later when the sore throat had become so severe I could no longer swallow fluids. At that point I still thought it was strep or tonsillitis & was shocked when triage whisked me into a code room after administering Epi

It turns out I had been in anaphylaxis the whole time - but my body exhibited the cardiac and GI symptoms first. The airway symptoms developed slowly so my body had time to adjust and I didn’t realize how swollen my airway was.

The chart I posted shows all the different ways it can manifest - and it’s important to be educated on the various presentations so you recognize anaphylaxis & can get immediate treatment. Even uterine cramps can be a sign. If respiratory involvement is absent but two other systems are impacted - that meets criteria for anaphylaxis.

I’ve been dealing with MCAS for years and I’m still learning all my triggers as well as the strange early warning signs my body gives me. Lately it’s been a hoarse voice, raised rash on shoulder & severe vomiting. Teeth chattering, violent shaking & slurred speech also common

I share my experiences in an attempt to educate people on the varied nature of MCAS attacks and the fact that anaphylaxis is not always sudden or obvious. Once identified it’s important to treat & be monitored for rebound or biphasic reactions.

Lastly if you have significant cardiac involvement with your MCAS reactions - it’s important to be aware of a relatively rare condition called Kounis syndrome. It’s an acute coronary syndrome caused my mast cells/allergic reactions.

It can cause spasms in the arteries of the heart and possible breaking off of plaques leading to coronary artery blockage. While considered rare - in recent years there’s been speculation it’s more common & simply under diagnosed and/or misdiagnosed.

I keep copies of all my EKG rhythm strips when I need paramedics or the ER for my MCAS reactions. It can be critically important to have them reviewed by an MCAS savvy cardiologist.

If ever in doubt - seek medical attention. Speak to your medical team about carrying an Epi pen and go to hospital if you have to use it. Even if you feel better - rebound reactions can be incredibly severe.

While MCAS can be an absolute beast to manage - medications, lifestyle and dietary changes can make a tremendous difference in quality of life. Patient support groups are an excellent resource for teaching how to identify & and eliminate triggers.

They can also provide emotional support which is critical as MCAS can be isolating & lonely. Remember you’re not alone & reactions aren’t your fault. Even the most careful patient can end up in anaphylaxis & we must give ourselves grace. It’s not our fault - it’s the disease.

#ChronicIllness #MCAS #POTS #Dysautonomia #MastCells #Spoonie #chronicallyill #LongCOVID