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Caitlinrose, One Of Our Members, Has Passed Away


Lukkychrm42
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:( Hi everybody,

I just wanted to let you know that an amazing young lady with post-viral dysautonomia and systemic mastocytosis passed away last Tuesday. She was on this board as CaitlinRose, but she didn't post very long as she got quite ill with the masto.

I knew her through another dysaut. group, and I'm still sort of digesting the news myself.

I'm still sending lots of love and hugs up to Connecticut to her family. :)

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i just looked up caitlyn's qoute under her member name. i really think it is moving and would like to simply put it out there for all to see.... very powerful. i believe caitlyn is doing what she loved to do most here in this life (under her signature), sing worship in church. she is in her heaven home church today, i believe doing just that, with no pain, no illness, and nothing holding her back.

so for you, caitlyn :

"When you come to the edge of all you know, and you are about to step off into the darkness, Faith is believing one of two things will happen...There will be something solid to stand on...or you will learn to fly "

believing you are standing solid today sweetheart, in heaven.

may your family be comforted in knowing they will see you again, but in the meantime, may the winds from above catch hold of each note you're singing from the heavens, and fall a comfort and peace in the ears of all your loved ones, bringing them assurance that you are home - safe and sound.

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nikigrl,

i'm sure there must have been other factors.

caitlyn had a post viral case of pots. usually people with post viral pots have the best chance at complete recovery. i know she had mastocytosis but i dont know enough about mastocytosis to really comment on that, it's severity, mortality rate, etc.......

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That's aweful news to hear...Makes me count my blessings...

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POTS, itself is NOT fatal. If you read carefully, she didn't die from POTS, but rather mastocytosis, which is when the body's allergic response goes haywire.

I feel so sad for Caitlin and for her family that she left behind.

Nina

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Hi,

Thanks for clarifying that Nina. In addition to dysaut, she had small and large fiber polyneuropathy, and she was diagnosed with the masto less than a year ago. She became allergic to the plastic in her feeding tube almost a year ago, and allergic to all the medicines they tried to control the masto and everything else with. She was very sick for a long time, and she got a new oncologist for the masto in October, but they were unsuccessful in finding medications that could help. Additionally, she was unable to get adequate nutrition, and it got to the point that she was safer at home than in the hospital.

As you all can see, she was an incredible person, and always optimistic and inspiring. She was truly beautiful inside and out.

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thanks so much for letting us know megan.

my heart & prayers most certainly go out to caitlin's family & friends.

~melissa

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Megan, thanks for keeping us informed.

I hope that you will be able to pass our collective condolences on to the family.

Nina

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Megan,

Thank you for sharing with us. I did not know Caitlin either, but like Morgan said, it sounds like she had an amazing spirit.

It breaks my heart to hear of her death at such a young age...

Hugs to you, as I know you are grieving. Also, if you know of a way to contact her family, please let them know how many people are holding them in their hearts...

Emily

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