Cure for Mastocytosis

28/10/2021

13/12/2020

Haven't posted in a while. Thought I'd do a convo starter... has your child or yourself (masto buddies i should say..) ever had a quick reaction to something you ate? Like not a bad allergic reaction..but like an upset tummy or the need to go to the bathroom??

My Masto child (Camy) is now 13! She has voiced how her stomach hurts and she gets bubble guts and has to p**p (sorry if thats TMI) so I took note and kept an eye on what she ate and if it happened afterwards. She LOVES milk and of course Ice Cream! After she'd drink and eat these...she'd get the bubble guts and run to the bathroom! So I told her let's try lactose free milk and dairy free ice cream.. luckily she likes them! I bought Fairlife brand milk..seem to be the only one I found thats like real milk. which it is...just the Lactose is taken out. The ice cream is a Breyers brand I think...and she enjoys it...but doesn't like that they only have two flavors in the stores by us. I have to get the pint ones that are different brand but are dairy free! She loves cookie dough and I was able to find one. so SCORE for this mom!

Well, stay safe and warm! Happy Holidays!

10/07/2019

It's been awhile since my last post! My apologies! I will try my hardest to post more often! I see there's over 1,000 followers! I'm in shock right now! Making this so many years ago I had never imagined it growing that much!

I started a blog but it's not about any one thing. I made it for everyone honestly. I've posted a few times on there..and plan to talk about Mastocytosis at some point and when i do i'll share the link!

Hope everyone is staying humble and managing their health well.

Until next time,
MUAH!

30/04/2016

Sorry i haven't been on in a while. I've been dealing with personal issues. I've noticed people have requested my website, but sorry, i don't have one. I'm just a mom looking for a cure for Mastocytosis for her little girl..and now my nephew too. Hope everyone is doing well considering this crazy weather we are having.

11/10/2015

A fighter from the start, he was born with a rare disease, Cutaneous Mastocytosis. Wyatt's tiny body produces too many mast cells. His skin blisters easily and he is at risk for severe anaphylaxis. There is little known about Wyatt's disease and there is a need for research, education, advocacy and…

11/10/2015

Been awhile since i posted..sorry about that. Been busy with new my baby. (Camy has another sister! )

Camy is now 8 & in 2nd grade. Her symptoms seem to come and go..lately its just allergies and being irritated a lot. I've got her on a schedule since school started. She just takes allergy medicine when needed and says it doesn't help at all. Other then that..she's had a few itchy episodes.

Also, come to find out my nephew has Mastocytosis as well. He's got dark spots/lesions all over his body. Different from Camy.

Hope everyone is doing good..i know we all are still waiting on a cure for sure..never know what's gonna strike an outbreak or episode..anyone know of any ways to get the awareness out..go ahead and post in comments or on the page. Thank you all for everything. I know I'm a lousy admin..lbvs.

01/05/2015

The cracker or the bite of ice cream -- Brynn Duncan still isn't sure which one sent her into anaphylactic shock that day

11/09/2014

07/09/2014

So, Camys 7 now and in 1st grade!!

16/03/2014

I just wanna say all is good nothing to new with Camy, just last week she was sick for 3 days, puking and what not...but I'm not sure if it was her Masto or just a bug she got. Hope all is well with everyone!

18/12/2013

How's everyone doing with this cold weather?

05/11/2013

I know I'm late on asking. But how was everyone's Halloween?

25/10/2013

I would like to make the page less borring...one idea i have is sharing peoples stories, like once a week...like star or member of the week type of thing...and suggestions?? Be more then happy to hear them.... (:

25/10/2013

Here's Camy and her brother in their Halloween Costumes. Camy is going to be a Vampiress...and my son..obviously Spiderman lol

20/10/2013

Halloween is coming up, anyone wanna post Lil Masto fighters in their costumes? (:

05/09/2013

Today my Lil Masto fighter is 6!

19/06/2013

Scars even on her scalp/back of her head..