November 6, 2025
Hi, my name is Btrfly6499. I'm here because
#MightyTogether #Migraine #MastCellActivationDisorder #atypicaltrigeminalneuralgia #EhlersDanlosSyndrome #Atypical #hypermobile #POTS
6 reactions •
1 comment
I’m writing this on behalf of my sister-in-law, who has Mast Cell Activation Syndrome (MCAS). She’s been in the hospital for two weeks now and things are getting worse, not better.
She was admitted because her ability to eat had declined so severely. She was already clinically malnourished and had lost over 40 pounds. For a long time the only foods she could tolerate were chicken and yams—and even that has now become impossible. She’s barely able to eat anything.
The hospital started her on TPN. When it wasn’t going well they doubled the dose. She had a reaction, they stopped it completely, and she’s been dealing with the after-effects of that as well.
Right now she doesn’t feel like she’s receiving attentive, comprehensive, or compassionate care. She’s struggling to advocate for herself, and it doesn’t seem like the doctors are really listening. Several professionals at the hospital have openly admitted they’ve never even heard of MCAS.
She has an appointment with an MCAS specialist in November, but at the rate she’s declining we’re scared she won’t make it there without better support. We’re actively looking for hospitals or medical centers that actually understand MCAS, take it seriously, and have the capacity to care for someone this complex.
If you or a loved one has been treated somewhere that listened, understood mast cell disease, and provided real nutritional and symptom management support, please share the hospital or program name. Any experience—good or cautionary—would help us so much right now.
We’re just trying to keep her stable and get her the kind of care she deserves until she can see her specialist. Thank you for reading, and thank you in advance for any guidance you can offer.
1 reaction I’m writing this on behalf of my sister-in-law, who has Mast Cell Activation Syndrome (MCAS). She’s been in the hospital for two weeks now and things are getting worse, not better.
She was admitted because her ability to eat had declined so severely. She was already clinically malnourished and had lost over 40 pounds. For a long time the only foods she could tolerate were chicken and yams—and even that has now become impossible. She’s barely able to eat anything.
The hospital started her on TPN. When it wasn’t going well they doubled the dose. She had a reaction, they stopped it completely, and she’s been dealing with the after-effects of that as well.
Right now she doesn’t feel like she’s receiving attentive, comprehensive, or compassionate care. She’s struggling to advocate for herself, and it doesn’t seem like the doctors are really listening. Several professionals at the hospital have openly admitted they’ve never even heard of MCAS.
She has an appointment with an MCAS specialist in November, but at the rate she’s declining we’re scared she won’t make it there without better support. We’re actively looking for hospitals or medical centers that actually understand MCAS, take it seriously, and have the capacity to care for someone this complex.
If you or a loved one has been treated somewhere that listened, understood mast cell disease, and provided real nutritional and symptom management support, please share the hospital or program name. Any experience—good or cautionary—would help us so much right now.
We’re just trying to keep her stable and get her the kind of care she deserves until she can see her specialist. Thank you for reading, and thank you in advance for any guidance you can offer.
2 reactions •
4 comments
Hi, my name is Lily. I'm here because I have several rare chronic illnesses plus some not so rare ones. Two that are the primary behind a lot of secondary are Autoimmune Autonomic Ganglionopathy and Autoimmune Gastrointestinal Dysmotility. My mom also lives with myasthenia gravis.
#MightyTogether #Migraine #AutismSpectrumDisorder #ADHD #Dysautonomia #AutoimmuneAutonomicGanglionopathy #Gastroparesis #EhlersDanlosSyndrome #deltagranulestoragepool #POTS #PolycysticOvarySyndrome #Scoliosis #accomodationparesis #MastCellActivationDisorder #longcovid
6 reactions •
1 comment
Hi everyone! I recently moved to the Seattle area and would love to make some new friends. I’m chronically ill, so my life looks a little different than most people’s, but I enjoy coffee chats, walks on good days, crafting, plants, farmers markets, and spending time with my dog. It can be hard to meet people as an adult, especially when health challenges are involved, so I thought I’d put myself out there. Feel free to message me or comment on this post and say hello❤️ #EDS #EhlersDanlosSyndrome #Spoonie #AutonomicDysfunction #Gastroparesis #MastCellActivationDisorder #ChronicIllness #ArnoldChiariMalformation #Syringomyelia #Diabetes #ChronicPancreatitis #ChronicPain #Friends
5 reactions •
2 comments
Hi, my name is VelvetMarginalia (she/her). I have hEDS, EOE, PTSD, fibro, and migraines. and I'm pursuing diagnosis of cervical instability, chron's, mcas, pots, and more. I am looking for community as my health has rapidly declined and I would love to find people who understand. I am also a mama to a medically complex kiddo, and both my kiddos have autism/ADHD. I'm also a lesbian and have an amazing partner.
6 reactions •
4 comments
Hi, my name is poohtraybuon. Both my adult children and I have
#MightyTogether #Anxiety #Fibromyalgia #ADHD #Migraine #POTS #Dysautonomia #AutonomicDysfunction #Anxiety #EhlersDanlosSyndrome #MastCellActivationDisorder and so many other acronymns.
7 reactions •
2 comments
Hi, my name is UsefulSnowman1979. I'm here because
#MightyTogether #Fibromyalgia #ADHD #EhlersDanlosSyndrome #AutismSpectrumDisorder #MCAS #avnrt
6 reactions •
1 comment
Latest
