we are blessed with
Astonishing support, an Amazing doctor and an Awesome God.
there is much to process after our appt's yesterday... we have confirmation of an additional disease but that is okay! God is sovereign over it all. it is a mast cell disorder.
i will write a more in depth post next week but for now here's a very brief introduction to the world mast cell disorders.
Mast Cell Diseases comprise disorders characterized by accumulation of genetically altered mast cells and/or abnormal release of these cells’ mediators. everybody has mast cells and they play an important role in the body however, in patients with mast cell diseases, the mast cells become hypersensitive and out of control.
Mast cell diseases include systemic mastocytosis (SM), where the body produces too many mast cells, and mast cell activation disease (MCAD), where there is a normal number of mast cells but they are too easily activated. mast cells contain chemicals and when they are triggered they release (called degranulation) these chemicals. this toxic overload increases inflammation levels and can cause both skin rashes and major systemic alterations.
a really good tutorial on mast cell disorders can be found by clicking here on these youtube videos on mast cell activation symptomatology. this is a 3 part series put out by the mastocytosis society.
parker and i both have a mast cell disorder. at this time, we have a diagnosis of MCAD however, our symptoms, both skin and systemic, make a diagnosis of SM a possibility. a diagnosis of SM is made thru skin and bone marrow biopsies. (eek!). it would be critical to undergo this testing, if there was a difference in the way the two disorders are treated. however, the drug treatment is the same for both. furthermore, treatment is aimed at symptom control and neither disorder is curative. in the future, it may become necessary to rule in or rule out SM, but we will cross that bridge if the need arises.
for the time being, the symptoms that were suspected of being mast cell related in both parker and i are responding positively to the treatment protocal. praise God!
one would think i would be greatly discouraged and downtrodden to be dealing with this. however, the way in which this diagnosis came about is nothing short of a miracle. this is considered a rare disorder and our diagnosis was an undeniably God engineered reveal. i truly stand amazed at the ways in which God works. it is quite the story and i hope to have it down on paper to share in the coming weeks.
on the lyme front, both parker and i have had some major breakthroughs in our battle with lyme, babesia and bartonella! Praise God! i will break down the details and next steps in our treatment in a later post. as usual, we left our appt on information overload and with a lengthy and detailed treatment regime. the likes of which will take several weeks to implement.
thank you to each and everyone of you for your amazing show of support - i can't express what it meant to be able to share those FB "likes" and your precious emails with parker and avery. they are tangible reminders of just how many folks we have standing with us. what an incredible gift you have given our family. we are touched and humbled that you choose to walk this journey with us.
Astonishing support, an Amazing doctor and an Awesome God.
there is much to process after our appt's yesterday... we have confirmation of an additional disease but that is okay! God is sovereign over it all. it is a mast cell disorder.
i will write a more in depth post next week but for now here's a very brief introduction to the world mast cell disorders.
Mast Cell Diseases comprise disorders characterized by accumulation of genetically altered mast cells and/or abnormal release of these cells’ mediators. everybody has mast cells and they play an important role in the body however, in patients with mast cell diseases, the mast cells become hypersensitive and out of control.
Mast cell diseases include systemic mastocytosis (SM), where the body produces too many mast cells, and mast cell activation disease (MCAD), where there is a normal number of mast cells but they are too easily activated. mast cells contain chemicals and when they are triggered they release (called degranulation) these chemicals. this toxic overload increases inflammation levels and can cause both skin rashes and major systemic alterations.
a really good tutorial on mast cell disorders can be found by clicking here on these youtube videos on mast cell activation symptomatology. this is a 3 part series put out by the mastocytosis society.
parker and i both have a mast cell disorder. at this time, we have a diagnosis of MCAD however, our symptoms, both skin and systemic, make a diagnosis of SM a possibility. a diagnosis of SM is made thru skin and bone marrow biopsies. (eek!). it would be critical to undergo this testing, if there was a difference in the way the two disorders are treated. however, the drug treatment is the same for both. furthermore, treatment is aimed at symptom control and neither disorder is curative. in the future, it may become necessary to rule in or rule out SM, but we will cross that bridge if the need arises.
for the time being, the symptoms that were suspected of being mast cell related in both parker and i are responding positively to the treatment protocal. praise God!
one would think i would be greatly discouraged and downtrodden to be dealing with this. however, the way in which this diagnosis came about is nothing short of a miracle. this is considered a rare disorder and our diagnosis was an undeniably God engineered reveal. i truly stand amazed at the ways in which God works. it is quite the story and i hope to have it down on paper to share in the coming weeks.
on the lyme front, both parker and i have had some major breakthroughs in our battle with lyme, babesia and bartonella! Praise God! i will break down the details and next steps in our treatment in a later post. as usual, we left our appt on information overload and with a lengthy and detailed treatment regime. the likes of which will take several weeks to implement.
thank you to each and everyone of you for your amazing show of support - i can't express what it meant to be able to share those FB "likes" and your precious emails with parker and avery. they are tangible reminders of just how many folks we have standing with us. what an incredible gift you have given our family. we are touched and humbled that you choose to walk this journey with us.
How wonderful you and Parker are making headway...Praise GOd!
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ReplyDeleteHi. Just curious, what did they use to diagnose the mast cell disease? And what symptoms are you having? I also have Lyme, and fear I may have a mast cell disease with it.
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