Hannah Sunderland, an MCAS Patient's journey.

Hannah talks about life with MCAS. Thank you Hannah for sharing your journey, please click share now to help us raise awareness.

[kathrynhammes]

I also have Hashimotos and MCAS. It took 10 ER trips and 1 hospital stay for me to get a referral to allergy. I am a doctor in psychology so when they started with the panic attacks, hypochondriac crap I would slam them down and point out as the only Dr. in the room trained to treat those illnesses this isn't even close to my illness. I still got jerked around but it only took me 3 months for diagnosis and not years as some folks. I recently started on xolair and this has been life changing. Best wishes to you. I am in the US and feel like in the 6 years since my diagnosis, MDs here are slightly more aware of this horrific illness.

[galaxygal]

It’s always a very frustrating journey for most sufferers of this rare disorder. I was lucky enough to find a Integrated Doctor who attended seminars regularly and was well educated on these Autoimmune diseases. It’s a really tough condition to have, and everyday is a battle, and every symptom is so random. I too got treated as a hypochondriac by many specialists and I cannot tell you the money I spent trying to find answers. Needless to say, my mental health has declined considerably.

[mumsow]

Yes. I've had recurring problems for years only to be inferred as hypochondriac and wasting doctors time. It's only because I became so ill after having COVID that I've been diagnosed as having MCAS by the long COVID clinic. I'm still struggling as I was diagnosed 2 months ago but only picking up medications today .

[Kuruflower]

Wow. So sorry for all the trouble you had. I too have a wonderful open minded doctor, who is helping me with long covid. No answers yet as my symptoms just amped up a couple days ago, i thought they'd subside.

Glad you are sharing your story, i hope others see it and help out.

Be well.

[Plaayerone]

So many people getting let down by Drs 😔

[debbiegraham]

Thank you for your video Hannah all helps us to be heard

[fabienneyvos]

I have mcas and I do understand what you ve been through because that s also my story.. So many times doctors told me " it s all in your head".. It s so frustrating .. I m French and doctors were hopeless.. So I went to Germany to see an mcas specialist and I did the 24h urine test to find out the methyl histamine.. It turned out that although on a histamine free diet, I was way above the upper norm.. Also I had an angio oedema.. My lips eye lids cheeks were so swollen and red.. That was impressive.. Then back to France with my results and pictures of my face, I started to appear as an mcas patient.. I did a bone marrow but there wasn t enough bone marrow so the lab couldn t use it and tell me if it was a mastosistosis or if the c kit gene had mutated.. Bottom line I have lots of inflammation throughout my body and excruciating pain.. I use anti histamine h1 h2 and anti leucotrienes /montelukast and Mast. Cell stabilizers.. Strong smells can trigger a flare, pollens, stress, medicines... You name it.. And just like you, I have auto immune hashimoto s... I was an painter.. Now I m a full time patient.!

[emmabennett-snewin]

Wow. Sounds like a terrifying experience so I'm glad you've come out the other side. I'm a MCAS sufferer due to I'm told mold exposure. Would you mind sharing the medication you took?

[jennygreenwood]

Yesterday, I went to a follow up appointment with the hematologist oncologist, only to be rushed out in less than 5 minutes. Felt more like I was on an assembly line than being a patient. This is NOT medical care!

[leannshort]

I hope this young lady is still doing well. I suffer and have had all those tests too. I’ve seen so many damn specialists it’s beyond nerve racking!! 🤬
My severe symptoms of not being able to breath, chest tightens, windpipe narrows, I cough violently until my back feels broken! Coughing up tons of mucus all day. I haven’t slept in the bedroom with my husband for over 2 friggin years now. I am so thin, I look like I’m at deaths door. I am getting a referral to a Mast Cell specialist in Boston. They will be inundated with all my medical records from the past 3 or more years. I can barely function anymore. This has seriously crippled and debilitated my life. Filed for SSDI but we know that will take forever to even get word about it and they’ll probably end up denying it anyway. Bastards! 🤬

[janicewolk]

English medical establishment is great at "it's all in your head" especially if you're female.

[marshallsweatherhiking]

Getting a diagnosis for this is so hard. Its a big problem if acute anaphlactoid reactions are rare. I only experienced two, but both were absolutely horrible. It felt like I was dying, like if I had collapsed from exhaustion after running a marathon but couldn’t recover. I couldn’t stand up or even sit upright without passing out. Yet it happens so fast that I’m better 2 hours later. Like am I supposed to purposely trigger one of these events just to give a blood sample showing elevated tryptase? That would be ridiculous.

The problem is other than these two events I just have debilitating low grade symptoms like headaches, dizziness, and sudden weird mood changes for no reason (Occasionally I will suddenly feel extremely depressed or extremely tired after a meal). I have been diagnosed with eczema, but its not really severe or constant. Rashes will just flare up randomly for a few days then fade. My worst symptoms are chronic tiredness and depression which I believe are mast cell related because unlike typical psychological illness they vary a ton throughout the day and seem to be triggered by meals. Also, the depressed feeling is accompanied by a weird physical sensation like pressure behind my eyes, light headedness, and nausea. I ruled out celiac and specific food allergies.

[Oogieone]

My Mom has Hashimoto’s (I do sometimes wonder if I have a latent case but my thyroid hormone always comes back normal) and this is like my life story, complete with the random issues when I was younger and I am a painter. Then I got Covid in July 2020 and started having the “panic attacks” that were not panic attacks, then I started having random lip, throat, and tongue swells daily and had all the tests including the bone marrow biopsy, then my doctor said it was probably MCAS and prescribed me cromolyn, Monteleukast, h1 and h2 blockers. My insurance denied Xolair. Now my swells are down to just occasional flares. My immunologist said the Covid probably flared up already existing mast cell/autoimmune issues. The “panic attacks” turned out to be supraventricular tachycardia caused by mast cell flares.

[jawhnie]

my story is very very similar, it’s been a little over a year, i worked though it for the first about 6 months and it got much worse/nobody knew what was happening. as of a couple months ago i ran into mcas and ever since treating it as such (quercetin, antihistamines, magnesium, etc) im seeing a lot of improvement for the first time. im seeing my doctor next week and talk to him about the stabilizers. im praying this is it.

[tinyspeckofdust]

Always always get a second opinion and if that doesn’t work third, fourth…It can get exhausting but you are the only person who knows that’s that there is something seriously wrong happening with your body. It’s scary how patients get dismissed or sometimes made feel inadequate when asking for help.

[AuroraReese.]

Im really suffering with this right now. The drs are no help. I don't ont know what im going to do. I feel like I'm playing russian roulette with the anaphylaxis reactions. My throat was open my mm with the last one. If my throat closes completely ill die. I'm on my own 99.9% of the time because my husband works away. The ambulances don't get to you for hours and it peaks within about 20/30 minutes. I'm either going to die infront of my kids or I'll be ok within an hour or so albeit drained and sleeping 😔

[carolashlee]

Gosh, this is been happening to me for the last 12 months.
It’s gaslighting.
My Dr is treating me for MCAS despite what the hospital and specialist said.
I also have blood clots from the Covid vax

[EdBrianBrtv]

Never under any circumstances let a doctor tell you that you're having a panic attack when you know you are sick, you shut them down straight away, MCA's isn't even rare it's like 1 in 10, 000 to 20, 000 on the planet

[sonicbloomtuts]

What's the point of getting doctors to diagnose when all they do then is give you meds to manage the disease, when in fact it can be healed just like so many other diseases? I never got the diagnosis, but have had MCAS since doctors had nearly killed me as a toddler. And yes, I've also gotten the "it's all in your head". I even did 25 therapy sessions that didn't do anything useful. The only thing then that helped was that I got a time out from everything. I'm done with doctors and am currently in the process of healing myself. It's working. There's so much scientific evidence on what works, yet doctors only play pharma shills as usual. Hard pass! That's how I got this in the first place.

[invisiblegypsy]

One day they will find its not so rare after all, just under diagnosed...and even harder in Canada to be recognised.