i light a match, and i wish it all away

04.20.25

MCAS is caused by a problem with mast cells, a type of immune cell in your body that acts as an alarm for invaders, having a faulty threat detection system.

mast cells release inflammatory markers called histamines in a process called "degranulation." these histamines do not attack the source of the problem directly like other immune cells do but instead act on your own cells to create responses like swelling and the production of mucus.

in a traditional allergic reaction, mast cells will incorrectly react to a harmless particle. with traditional allergies the same particles will receive a reaction every time the mast cells interact with them. in traditional allergies it is common for the reactions to improve or worsen with repeat exposure. sometimes people grow out of a traditional allergy but this takes time.

MCAS operates differently. in MCAS, mast cells will still degranulate incorrectly in response to harmless particles. the difference is that MCAS lacks consistency. in MCAS, mast cells not only incorrectly label harmless particles as dangerous but also are unable to make up their mind about what is dangerous and what is safe. MCAS is caused by not just a faulty ability to distinguish threats but also a highly heightened sensitivity to potential threats.

in MCAS, triggers for reactions will change frequently and unpredictably. things that were safe the day before may be dangerous the next day and safe again the day after. people with MCAS often have a handful of consistent triggers that will reliably produce a response. people with MCAS will also usually struggle to identify all of the things that trigger a reaction because, by the time someone has started narrowing down possibilities, the trigger has changed.

before diagnosis, many people with MCAS will build a long and disorganized list of allergies that they have attempted to narrow down. these lists will usually have new, often highly specific, triggers being added frequently as that person attempts to identify a consistent pattern behind their reactions.

My story and hope for survival😭

I am Israa Alwan I am 23 years old, a young woman who once had big dreams and was ready to achieve them. After years of hard work and study, I finally received my degree in Early Childhood Education. It was an indescribable joy, knowing I was about to start my journey as a teacher, to help shape young minds and walk alongside them in their first steps toward knowledge.🥺🧑🏻‍🎓🧑🏻‍💻

But my dream didn’t last. The war came and turned 🇵🇸my life upside down. My home, once a safe haven, is now rubble, and I’m left with only a few belongings and broken dreams. Now, I have no home, no job, and no sense of security. I move from one place to another with my husband, carrying my unborn child, searching for shelter to protect us from the cold winter and the scorching summer.😭😭🍉

I would like to share a part of my life with you…🥺🌠

I am Esraa 🤍 I married the man I love, and he is my support and strength in this difficult world. Now I am pregnant with our little baby, and we dream of the day we hold our child in our arms, filling our lives with love and hope.

But the reality around us is very hard 💔

We are living in a worn-out tent that cannot protect us from the cold or the rain. Every day, I worry about my baby growing inside me and how I can keep him safe in these conditions.

During this sensitive time, I truly need proper care, healthy food, clean water, and vitamins to protect my baby and myself 🤰💧💊

Donation link...... 🍉

If you can help, even a little, it would make a huge difference in our lives 🙏💗

Verified...,🇵🇸

The specialist I go to for my narcolepsy told me yesterday during my appointment about how he is involved in three studies on orexin agonists, and mentioned that not only do the side effects seem minimal, but that people have described the difference as magical.

And he said that if things continue as planned, some should be approved by the FDA this year, and that these next few years will likely be revolutionary for treatment, in the same way Xyrem was when it was first approved.

And the little research I did on the ESS scores from Xyrem/Xywav and for one of the main orexin agonists being studied (TAK-994), the average score improvement for the lowest dose of the agonist tested was slightly higher than the average at the two-week final dose given with Xywav.

The Xywav reduced the score by 9.6 on average.

TAK-994 at 30 mg reduced it by an average of 10.1

At 90 mg, by 13.5

And the highest dose, 180 mg, by 15.1

Sources:

https://www.xywavhcp.com/idiopathic-hypersomnia/efficacy/

I recently got off the phone with one of the agents who was kind enough to help me get 200 knocked off but I still have the 100 left.

I am humbly offering commissions [6/7 slots open] i work a bit slow tho.

I also have donations open like always!

ppal: [email protected]

cshapp: $shinybynature