My brother has aquagenic urticaria, getting hives and welts all over his body and anaphylaxis. He started a monthly allergy shots when he was formally diagnosed at 13. This shot helps prevent the large reactions and allows him to lead a normal life.
here's the problem with that logic.... anxiety is actually normal. You are born with it. Its a natural defense mechanism and I dont see a correlation between anxiety and allergies. Its more than likely the chemical compound in the medication, not anxiety itself. Its like thalidomide. It started out as a drug to be proven quite dangerous but the chemical compound itself was shown helpful to become other drugs we use today. Allergies can come from a variety of things and you can also be born with those as well. Other conditions, physical conditions do cause allergies too. Genetics play a part in allergies to some capacity but not always. So there wouldn't be much room to study and possible correlation between allergies and anxiety since both by themselves are quite well studied. Especially when you have an allergist as a specialization... they would know by now if there was any correlation and so far there isn't. When anxiety is natural and normal and most people can control it and yet can have allergies, even life threatening allergies at the same time. Its not really something worth studying because I cant see any reason for such a relationship that logically wouldn't exist. Otherwise you would see some serious problems in people over several generations by now. With modern medicine, they could have found this out 100 years ago easy.
@@Skatejock21 Well, what if the allergy caused anxiety in the person and there is a vicious cycle going on? That’s what I’m trying to say. High cortisol levels and histamine causes anxiety which is also caused by allergies. That’s what I’m getting at.
Wow! What an inspirational group of people. I have a sun allergy, I have to wear spf 50 in the winter and spf 100 in the summer. Instead of boosting my vitamin D, it depletes it and I am left exhausted and in excruciating pain. I rarely go out now, which is fine, I'm almost 58. The Drs think that it's something to do with my Lupus. These young people are missing out on the most important times of their lives. It's incredibly sad.
I have MCAS. It took 35 years and about 100 MD to get a diagnosis other than "Crazy Woman Disease"! I can get the mast cell stabilizer, Ketotifen, in 3rd World Countries, but NOT in the US, so I left. Luckily I studied Molecular Biology at uni and can treat myself. You have no idea the damage US male docs did over a lifetime of telling me there's nothing wrong with you. You're just crazy!
I kind of went through the same thing. 28 years of male doctors telling me that it was just anxiety, all in my head, I needed anti-depressants and therapy, etc., and eventually I just got sick of it and figured out what was wrong with me on my own: Hashimoto's Thyroiditis. They were going to try me on anti-psychotics before I got frustrated and figured it out myself. I've only had 1 single doctor in my entire life who's listened to me. I'm 34.
I've been experiencing this issue myself. I haven't yet be fully diagnosed, so thank you for letting me know that I'm not alone. I also want to point out that there weren't any men experiencing this. Coincidence?
My allergies aren't that bad but growing up in a small area where no one else had mine level of allergies I can relate somewhat! 😢 Couple of my family members called me the bubble girl back in the 80's.
Isn’t odd, that those dealt the hard cards, seem to be happier than those living normally. Maybe because they go through so much pain and difficulties, that when they can do normal things, they appreciate them so much more and never take anything for granted. The rest of us, don’t even think about how lucky we are, to be healthy. Life can be incredibly unfair to some, my son included, who was diagnosed with cancer at age 5. This experience led me to meet some of the most incredible people on the planet, so brave, so inspirational and yet living with huge challenges that most people don’t even consider.
I have Cholinergic Urticaria, allergies to heat. I do understand what they're going through. If I get hot for a second I start to itch. If I'm out in the sun for too long I get hives. Not fun. I can't even exercise. When I cook I need to turn on fans even in winter.
I know how some of these girls feel when they have a flare up. Because I'm allergic to myself. My immune system attacks it's self, making me to live with out an immune system. Yes, I get sick often. Some of the side effects from the disease, is that I have extremely sensitive skin. Any sun, latex, rubber, plastic, and many other products make my skin blister at the lightest touch. I do my best to live my life to the fullest, despite my disease. Down side of this disease is the a hospital is like my second home. When my hives come on my skin, they are white in the middle with red around it and stick out from my body. At this point they are in and on every one of my organs. They are very hot as well as extensively itchy. The only relief I can get from them is to have a "hot bath." A hot bath for me is like a luke warm water for others. My voice comes and goes due to the hives. My throat closes off quite often nowadays. When I feel it happening I due my best to get any this cold to eat or drink, which has been helping to stop it from fully closing off.
Lizzie needs to have an umbrella at all times. I don't have that terrible disorder, but I burn so fast that I always carry an umbrella and I have for years.
Watching this has put so much into perspective. I will never whine about ragweed or maple pollen again. Seasonal allergies are nothing compared to the suffering in this this video. At least I get a reprieve during the cold winter season, no matter how miserable I feel the rest of the year. ❤
Lord Bless everyone with severe allergies I'm siiting here looking at them my body is very itchy broke out badly from my food acid allergies it feels like ants, bees biting under my skin I'm irritated too
I likely have Mast cell too, though they've had issues testing & already Dx w/EoE is enough for treatments, & have EDS, & POTS, complicating their efforts. l'm allergic to food w/out preservatives(IDK why), water, antibiotics, latex, myself, epi-pen itself, & sun or any strong lights, are a few of mine. Mine weren't severe till I was about 20, showing 1 at a time. I usually have several anaphylactic reactions a day, where my throat swells, & treated by massive amounts of Benadryl each time & preventive meds like steroids. I get the reaction coming back too, & hard for people to understand. I relate to them so much, even if it's another reason, or trigger, I think there's a lot in common too. It looks like they all have family around them who love them, which is maybe more important than meds, when there's any barrier.
Natasha my niece has Mastocytosis and takes Sodium Cromalglycate before she eats to reduce her reactions my daughter has MCAS and has been using sodium Cromalglycate for over 30 years. Hopefully you already take it.
What is wild to me, is that Lizzie's brother decided to procreate without undergoing genetic tests, even though he knew he could be a XP carrier, and he now has daughter that will suffer her whole life...
@@girlfromdabay93 it’s not a disability though, it’s a severe medical condition, that causes intense pain and suffering… if it WAS a disability than yeah, I would agree, but it’s not.
I see your point, but Lizzie and her niece seem to have a pretty good quality of life (at least from what we’re seeing here). It’s not like she has microcephaly or something.
assuming that somebody who if exposed to UV light will develop skin CANCER will suffer their entire life, isn’t assuming her life isn’t worth living because of a disability… i mean i guess we don’t know we aren’t the person who wrote that but…
Sorry but i dont care what condition you have..keeping a poor bird in such a tiny cage and those poor fish in such a tiny bowl is so f k n Cruel. No excuse for that disgusting cruel sht.
Welp- The fish can't do anything else, but the bird can come out of the cage and fly around. I have a large parrot (his cage is huge) and I leave the door open, but he chooses to hang out in there on his favorite perch quite often even though he has other perches outside the cage that he is free to lounge around on.
You all should eat an ONLY steak and salt diet like Jordan Peterson's daughter Makayla. She was also extremely sick and lives on steak only and is fine.
| 2:16 | I adore the fact the mother decided to protect herself - as well - though. ps: *Adored* seeing the interaction between the daughter and mother. 🩷🤍🤍
Beth has such a beautiful and precious being on her side. I hope she’ll always acknowledge that. ❤
My brother has aquagenic urticaria, getting hives and welts all over his body and anaphylaxis. He started a monthly allergy shots when he was formally diagnosed at 13. This shot helps prevent the large reactions and allows him to lead a normal life.
The last girl and the comment "why aren't you thin" made me so mad. She's so thin but since she's no Eugenia thin then she's lying?
We very much need to study the relationship between anxiety and allergies.
For real
Yep.
They feed each other. You eventually become so fearful of a reaction…and if you’re not careful that anxiety takes over.
here's the problem with that logic.... anxiety is actually normal. You are born with it. Its a natural defense mechanism and I dont see a correlation between anxiety and allergies. Its more than likely the chemical compound in the medication, not anxiety itself. Its like thalidomide. It started out as a drug to be proven quite dangerous but the chemical compound itself was shown helpful to become other drugs we use today. Allergies can come from a variety of things and you can also be born with those as well. Other conditions, physical conditions do cause allergies too. Genetics play a part in allergies to some capacity but not always. So there wouldn't be much room to study and possible correlation between allergies and anxiety since both by themselves are quite well studied. Especially when you have an allergist as a specialization... they would know by now if there was any correlation and so far there isn't. When anxiety is natural and normal and most people can control it and yet can have allergies, even life threatening allergies at the same time. Its not really something worth studying because I cant see any reason for such a relationship that logically wouldn't exist. Otherwise you would see some serious problems in people over several generations by now. With modern medicine, they could have found this out 100 years ago easy.
@@Skatejock21 Well, what if the allergy caused anxiety in the person and there is a vicious cycle going on? That’s what I’m trying to say. High cortisol levels and histamine causes anxiety which is also caused by allergies. That’s what I’m getting at.
Wow! What an inspirational group of people. I have a sun allergy, I have to wear spf 50 in the winter and spf 100 in the summer. Instead of boosting my vitamin D, it depletes it and I am left exhausted and in excruciating pain. I rarely go out now, which is fine, I'm almost 58. The Drs think that it's something to do with my Lupus. These young people are missing out on the most important times of their lives. It's incredibly sad.
I have MCAS. It took 35 years and about 100 MD to get a diagnosis other than "Crazy Woman Disease"! I can get the mast cell stabilizer, Ketotifen, in 3rd World Countries, but NOT in the US, so I left. Luckily I studied Molecular Biology at uni and can treat myself. You have no idea the damage US male docs did over a lifetime of telling me there's nothing wrong with you. You're just crazy!
I kind of went through the same thing. 28 years of male doctors telling me that it was just anxiety, all in my head, I needed anti-depressants and therapy, etc., and eventually I just got sick of it and figured out what was wrong with me on my own: Hashimoto's Thyroiditis. They were going to try me on anti-psychotics before I got frustrated and figured it out myself.
I've only had 1 single doctor in my entire life who's listened to me. I'm 34.
I get my ketotifen compounded!!
Do you take Sodium Cromalglycate ?
I take cromolyn for my MCAS, and it mostly keeps me out of the ED- is the keto much better?
Sasha and beth are so cute, you can tell how much they love and care for eachother
I have dysautonomia and EDS, I have sensitivity but not MCAS. It’s rough and these people are amazing.
Me too! Hello fellow zebra 👋
Me too. I do have MCAS, but nowhere near this level
Hi fellow zebras!! I have EDS, dysautonomia and also MCAS, but like Craftgrrl14, not this severe! I take Zyrtec and Famotidine to help with it.
Fellow spoonie here! Pots, MCAS (not as bad), ME/cfs, post-viral dysautonomia….. so much fun!
@jenng3649 how are you managing on the famotidine + Zyrtec. I've found its not working well more me.
MCAS patient here. Major relief from weekly IV Benadryl, IV Famotidine and fluids. Also H1/H2 blockers and sodium cromoglycate.
I've been experiencing this issue myself. I haven't yet be fully diagnosed, so thank you for letting me know that I'm not alone. I also want to point out that there weren't any men experiencing this. Coincidence?
My allergies aren't that bad but growing up in a small area where no one else had mine level of allergies I can relate somewhat! 😢
Couple of my family members called me the bubble girl back in the 80's.
Isn’t odd, that those dealt the hard cards, seem to be happier than those living normally. Maybe because they go through so much pain and difficulties, that when they can do normal things, they appreciate them so much more and never take anything for granted. The rest of us, don’t even think about how lucky we are, to be healthy. Life can be incredibly unfair to some, my son included, who was diagnosed with cancer at age 5. This experience led me to meet some of the most incredible people on the planet, so brave, so inspirational and yet living with huge challenges that most people don’t even consider.
"Shed light on her condition" 💀
lol
I have Cholinergic Urticaria, allergies to heat. I do understand what they're going through. If I get hot for a second I start to itch. If I'm out in the sun for too long I get hives. Not fun. I can't even exercise. When I cook I need to turn on fans even in winter.
Lizzie is a sweetheart!
I know how some of these girls feel when they have a flare up. Because I'm allergic to myself. My immune system attacks it's self, making me to live with out an immune system. Yes, I get sick often. Some of the side effects from the disease, is that I have extremely sensitive skin. Any sun, latex, rubber, plastic, and many other products make my skin blister at the lightest touch. I do my best to live my life to the fullest, despite my disease. Down side of this disease is the a hospital is like my second home. When my hives come on my skin, they are white in the middle with red around it and stick out from my body. At this point they are in and on every one of my organs. They are very hot as well as extensively itchy. The only relief I can get from them is to have a "hot bath." A hot bath for me is like a luke warm water for others. My voice comes and goes due to the hives. My throat closes off quite often nowadays. When I feel it happening I due my best to get any this cold to eat or drink, which has been helping to stop it from fully closing off.
I’m so sorry. Sending you hugs
Caroline is so sweet and beautiful. And thin! I can't believe anyone would say otherwise. Her mom is a dear.
Lizzie needs to have an umbrella at all times.
I don't have that terrible disorder, but I burn so fast that I always carry an umbrella and I have for years.
Everyone needs a partner like sasha
Watching this has put so much into perspective. I will never whine about ragweed or maple pollen again. Seasonal allergies are nothing compared to the suffering in this this video. At least I get a reprieve during the cold winter season, no matter how miserable I feel the rest of the year. ❤
Lord Bless everyone with severe allergies I'm siiting here looking at them my body is very itchy broke out badly from my food acid allergies it feels like ants, bees biting under my skin I'm irritated too
Aw im sorry . I hope it can vet better . Stay strong
I likely have Mast cell too, though they've had issues testing & already Dx w/EoE is enough for treatments, & have EDS, & POTS, complicating their efforts. l'm allergic to food w/out preservatives(IDK why), water, antibiotics, latex, myself, epi-pen itself, & sun or any strong lights, are a few of mine. Mine weren't severe till I was about 20, showing 1 at a time. I usually have several anaphylactic reactions a day, where my throat swells, & treated by massive amounts of Benadryl each time & preventive meds like steroids. I get the reaction coming back too, & hard for people to understand. I relate to them so much, even if it's another reason, or trigger, I think there's a lot in common too. It looks like they all have family around them who love them, which is maybe more important than meds, when there's any barrier.
God Bless everyone who has to endure these uncontrollable allergies. ❤❤❤❤
Natasha my niece has Mastocytosis and takes Sodium Cromalglycate before she eats to reduce her reactions my daughter has MCAS and has been using sodium Cromalglycate for over 30 years. Hopefully you already take it.
With Cherelle having the allergy to water and severe skin allergy, how does her body cope when she sweats, does she break out in bad hives and rashes?
Thanks for sharing 🌹
Im also allergic to myself ! But i never had anaphylactics ! But i am a severe asthmatic with a rare kind of asthma !
I am also allergic to water to I hate it 😪💔
I have a rare condition to. It is a mitochondrial disease and has made me legally blind and have chronic pain and have significant hearing loss
🫂
Oh dear ❤ much love and many blessings for you 🙏
Sending prayers for them ❤️❤️❤️❤️❤️❤️❤️🙏🙏🙏🙏🙏🙏🙏
What is wild to me, is that Lizzie's brother decided to procreate without undergoing genetic tests, even though he knew he could be a XP carrier, and he now has daughter that will suffer her whole life...
What’s wild to me is you assuming life isn’t worth living just because of a disability
@@girlfromdabay93 it’s not a disability though, it’s a severe medical condition, that causes intense pain and suffering… if it WAS a disability than yeah, I would agree, but it’s not.
@@tocasmiley360actually, I have it too, and it is disabling. So it is a disability. 🙄
I see your point, but Lizzie and her niece seem to have a pretty good quality of life (at least from what we’re seeing here). It’s not like she has microcephaly or something.
assuming that somebody who if exposed to UV light will develop skin CANCER will suffer their entire life, isn’t assuming her life isn’t worth living because of a disability… i mean i guess we don’t know we aren’t the person who wrote that but…
I can relate to these stories! MCAS is no joke. From one spoony to another stay safe everyone.
I too have Mast Cell Activation
Lizzy is adorable
I had MCAS for several years but not to this severity.
MCAS is not curable. You can't just not have it anymore. You can be on treatment to make it less severe.
Same I have mcas but not to this intensity.
was Natasha microwaving foil???
Right!! I was like girl is that tin foil!!
How did her house not burn down lol
It's a microwave convection oven. I have one. Foil acts as it would in a normal oven.
❤❤❤
And I get mad when paracetamol take more than 3 mins to work 😮
Sorry but i dont care what condition you have..keeping a poor bird in such a tiny cage and those poor fish in such a tiny bowl is so f k n Cruel. No excuse for that disgusting cruel sht.
Welp-
The fish can't do anything else, but the bird can come out of the cage and fly around.
I have a large parrot (his cage is huge) and I leave the door open, but he chooses to hang out in there on his favorite perch quite often even though he has other perches outside the cage that he is free to lounge around on.
Poor animals 😢
My daughter is allergic to everything. Plus sge is a migraine sufferer
The drs can't figure out
I love Caroline ❤ she's beautiful 🎉
XP can happen to anybody. Audience wishes hapless victims all the best. Cheers!
woah
😮😮😮😮😮
😍
Allergies
You all should eat an ONLY steak and salt diet like Jordan Peterson's daughter Makayla. She was also extremely sick and lives on steak only and is fine.
this is ridicoulous. My daughter is highly allergic to beef. She would never be able to live on this diet. Every person is different.
| 2:16 | I adore the fact the mother decided to protect herself - as well - though. ps: *Adored* seeing the interaction between the daughter and mother. 🩷🤍🤍
❤❤