Living with Systemic Mastocytosis

Meet Andrew, patient from the UK living with systemic mastocytosis (SM), a rare blood disorder that can affect many different body systems, including internal tissues and organs, such as the liver, spleen, bone marrow and small intestines.
Learn more: bit.ly/2Ri4zHD
© 2020 Novartis AG

[@rauldobble3222]

Thank you for this video. I’ve just been diagnosed with mastocytosis and I’m so terrified. I have more doctors appointments to go to to get the final word.

[@zahavablake4457]

I suffer from ASM and it can be very isolating. Thanks for this, made my day

[@pinkpentacles3748]

Do you think we could talk I'm trying to figure out if I have this disorder or MCAS

[@helsshaks3847]

Very inspiring, thank you Andrew! Recently jumped from ISM to SM-AHN.

[@casperinsight3524]

Living in a bubble is no fun especially during covid lockdown

[@CaspianLeads]

Thank you for making this video. My cousin is a survivor with ASM. I recently received a diagnosis for another life long cancer and started learning more about his. This is a great lens into life with ASM. It is so hard to understand. Thanks for the start.

[@peaveawwii1]

Thank you for sharing this. My mother is in the hospital with this disorder

[@artistjackiecarpenterartli5155]

Well said. I am living the same dream. Good luck. Hope you are well.

[@fusion-music]

Great video. Nicely presented from the point of the patient. Great that mental wellbeing was mentioned. Very important in so many areas. My diagnosis is fibromyalgia, but similar issues & challenges are faced & there are symptoms not under the umbrella of "fm". This video has been shot well and very nicely edited too.

[@FluxyMiniscus]

Yup, I’m at ten plus years of trying to find a definitive diagnosis. Definitely feeling like people think I’m neurotic/a crybaby…. And I’ve given up many many times after disappointing Drs visits. Right now I’m experiencing a gastro and skin super flare- immense stomach pain/ cramping and digestive problems, but the worst part for me is the skin issue….I feel like I’m on fire/itching and numb at the same time…all over my body (it used to just be my legs starting in 2006) and numbness/burning on my face also inside my mouth/tongue. Oh, and dizziness with occasional vertigo too. Did I mention pain and exhaustion too? Yup. Still….no real diagnosis, no Dr in my city that treats Mast Cell issues….I’m not even sure that’s really what’s going on, so I’m hesitant to do a big trip to see a specialist….only to be told once again that they don’t know what to do, or can’t do anything for me. I’m only 55….and have spent the last 15 years searching for answers. Unbelievably frustrating

[@Ib90]

I have the same issues.😔

[@elaineh40]

You get the same issues as me and I was diagnosed when I was 12 bye luck and a very close family friend getting me in to see her dermatology Dr. They didn't do anything to help with my skin or other issues. I have Lichen planus witch effects my mouth, Sounds like you may have a touch of that to. It looks like white marks or scaring in the mouth in the sore areas. Good luck, I hope you get a diagnosis soon and get the help you need x

[@elaineh40]

I'd ask for a c_kit test as they will tell the dr if it's more masto or anather issue. If its high it will tell Dr you need to have more tests in line with a mastcell condition. X

[@tonyaquilina7709]

Just being diagnosed with this. Could you help and tell my how it's going to effect and what type of pain Please Thank you.

[@SwellowOffical]

I have the more, riskier one aka the worst (rarer) one. I can’t drink or eat avocados or anything tbh. I throw up if I do. I get cramps and other things. My body is very healthy so I think I’m gonna be alright. This also sucks because I am amazing at track… I wished I was normal

[@avery1199]

I've had mastocytosis since I was 3, and I was diagnosed with cutaneous mastocytosis when I was 4. I was always told that it would go away when I was a teenager. I've had severe, frequent and unpredictable allergic reactions, and they have been getting worse. I'm 15 now, and I always thought that mastocytosis would go away when I turned 13, but they just got worse. I go to A&E/ER multiple times a year, and I was recently told that I could have it for the rest of my life. I've been told that a bone marrow biopsy would predict it, but I don't know if I could handle the results. Should I get it?

[@Novartis]

​We are sorry to hear about your condition. We advise you to consult your physician.​​

[@naturechild2022]

This is one of the final things that doctors will do in diagnosing this disease...However, other extensive blood/ genetic blood work should be done first before doing this...You need to have certain genes in your blood work show up a certain way...One gene they look for is called the Kit gene...If that is positive along with a few other genes then a bone marrow biopsy would be done to verify mastocytosis..They take the marrow and test it from your hip...You don't feel anything as you are numed really well before the procedure....

[@RemainedAnonymous]

I know exactly this. It started getting worse for me at 18 and now 19 is just hectic. You'll be okay though

[@11crunmch33]

That’s common. My baby sister has systemic masto (she has confirmed masto in her skin and it’s pretty severe. We can only guess with systemic because, well she is allergic to anesthesia.) and that is a false rumor unfortunately. What we do know, is that adolescent is the worst, but it’ll calm down as you get older TYPICALLY. Growing also helps with this, since it spreads those damn mast cells around. There is probably more, but since I am only a sister and my parents are the medical professionals I can’t do much.

[@glasscandy1996]

same thing with me. i have had it since birth and i’m 17 now. i still have it and frequent bad flare ups. i was told it would go away by the time i was 10.

[@thefamilyrider7197]

Thank you, Very inspiring. If Anybody knows ...... Is there anyone been cured from Mastocytosis (whether Cuteous Mastocytosis or systemic Mastocytosis) ???? Please i wanted to know whether it is curable or incurable at all ???

[@naturechild2022]

There are different levels that the doctors look for when suspecting or trying to diagnose this...That shows up in blood tests.. It is somewhat tiered like a cancer diagnosis but it isn't necessarily cancerous(usually it isn't)...It isn't curable but treatable...It takes several doctors to formulate a plan for their patient's as everyone's experience is a bit different.... .And since it tends to be a type of allergic reaction eliminating some of those allergens and triggers is the first step.... Hope this helps and answers your question some..

[@avery1199]

It can't be cured.

[@11crunmch33]

Nope. So far, there is no cure. Different ways to treat. My sister has Systemic Masto (can’t test because she is allergic to anesthesia) and we discussed with the docs about this and so far, nothin. However, after puberty, and some growth, they TYPICALLY see patients get better.