Thank you for this! I was diagnosed a while ago with HATS after spending years being ignored by doctors & being told I made it up/it was just anxiety, but now I’m on medications & a feeding tube & IVs that help control it. Thank you for all the work you do! I can say it has truly turned my life around! ❤️
After years of suffering I was just diagnosed with HaTS (Hereditary alpha tryptasemia syndrome). I was overjoyed to finally have a reason why I was feeling unwell. I hope they can discover ways to help all of us who have this.
Wow. Wow! This is huge. I hope a way to reduce the Tryptase can be found, to provide some relief to EDSIII patients who test with extra copies of this gene.
I know it has been four years. But there is some interesting studies coming out on XOLAIR which is an IGE binder so it helps prevent the breakdown of mast cells.
Recently tested positive for HAT. I also have EDS and Gastroparesis, among other disorders. I'm on many mast cell stabilizers and still have to live in a bubble. Please continue to find a cure
I am waiting on results for this test, but I do think it will be positive. I have high tryptase and almost all of these symptoms. My children are also affected. One has high tryptase as well. It's difficult to find the right doctors to treat something they don't know much about.
Did you confirm the diagnosis of mastocytosis with necessary bone marrow biopsy? If you relied upon the lab testing of tryptase only your research is limited to such and does not include confirmed diagnosis .This is done in clinical practice
I have Lyme disease among other things ... I have had symptoms of this my entire life but the docs I'm at now have been doing some digging and suspect some form of mast cell. Im thinking I have HaTs. I am having a baseline Tryptase blood test done tomorrow but I believe you can have genetic tests done to rule in or rule out 100 % which is what I may try to have done next if the blood test doesn't help. My docs have told me to take quercetin, Vit C, antihistamines, Pepcid and LDN daily to help with symptoms. I haven't been able to go without antihistamines for about 40 years or I am itchy all over and can get hives easy. Hope this helps a bit and hope you have been able to get some more info! - to have a basline Tryptase text done it's best to go off all Mast Cell - Hereditary Alpha Tryptasemia meds or it may cause the Tryptase to now be elevated
Thank you for this! I was diagnosed a while ago with HATS after spending years being ignored by doctors & being told I made it up/it was just anxiety, but now I’m on medications & a feeding tube & IVs that help control it. Thank you for all the work you do! I can say it has truly turned my life around! ❤️
The er has me listed as having anxiety when I was actually having a reaction.
After years of suffering I was just diagnosed with HaTS (Hereditary alpha tryptasemia syndrome). I was overjoyed to finally have a reason why I was feeling unwell. I hope they can discover ways to help all of us who have this.
I have EDS, POTS, ME/CFS, Neuropathic Pain and possibly MCAD. I am excited by this research!
Wow. Wow! This is huge. I hope a way to reduce the Tryptase can be found, to provide some relief to EDSIII patients who test with extra copies of this gene.
I know it has been four years. But there is some interesting studies coming out on XOLAIR which is an IGE binder so it helps prevent the breakdown of mast cells.
@@paulconner4614, Has this been Published yet, Paul? Can you post the link here? thanks
The disease is Hereditary alpha tryptasemia.
This gives me so many answers when looking at my own DNA profile. Thanks!
Oh please, where can I find the new updates on this research????
Recently tested positive for HAT. I also have EDS and Gastroparesis, among other disorders. I'm on many mast cell stabilizers and still have to live in a bubble. Please continue to find a cure
I am waiting on results for this test, but I do think it will be positive. I have high tryptase and almost all of these symptoms. My children are also affected. One has high tryptase as well.
It's difficult to find the right doctors to treat something they don't know much about.
I just found out today that I have HATS. I've been diagnosed with Advanced Systemic Mastocytosis for 5 years now..
Please help us ☹️
So what is the "frustrating syndrome" called. I have EDS and so do three of my children and we have a lot of those symptoms
Blue Skyze Thank you
Araceli1199 LS elevated Tryptase levels
Alpha Hereditary Tryptasemia
Did you confirm the diagnosis of mastocytosis with necessary bone marrow biopsy? If you relied upon the lab testing of tryptase only your research is limited to such and does not include confirmed diagnosis .This is done in clinical practice
How do I test for this and what are the remedies?
I have Lyme disease among other things ... I have had symptoms of this my entire life but the docs I'm at now have been doing some digging and suspect some form of mast cell. Im thinking I have HaTs. I am having a baseline Tryptase blood test done tomorrow but I believe you can have genetic tests done to rule in or rule out 100 % which is what I may try to have done next if the blood test doesn't help. My docs have told me to take quercetin, Vit C, antihistamines, Pepcid and LDN daily to help with symptoms. I haven't been able to go without antihistamines for about 40 years or I am itchy all over and can get hives easy. Hope this helps a bit and hope you have been able to get some more info! - to have a basline Tryptase text done it's best to go off all Mast Cell - Hereditary Alpha Tryptasemia meds or it may cause the Tryptase to now be elevated