Caitlinrose, One Of Our Members, Has Passed Away

[Lukkychrm42]

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.

[nikigrl8883]

thats horrible.... how old was she? did she die from dysautomia or somthing else with it...do people die from masto.....? i didnt know that ....im very sorry for her family too

[cardiactec]

i am so sorry to hear that. how sad. i hope her family is being comforted. which also reminds me of jan from michigan. thoughts and prayers being sent from me to both families today.

[MomtoGiuliana]

So so sorry to read this sad news. She was very young. I just looked back at all of her posts. Apparently she had post-viral POTS, along with the mastocytosis, the POTS was diagnosed as "progressive"--which is rare. My thoughts are with her and her family.

Katherine

[nikigrl8883]

i hope i dont sound rude to ask this on this post but i figured i mine as well instead of starting a whole other post....i thought people didnt die from pots,,,,ive never heard of progressive pots whats that? how do doctors know if you have that.....this stuff is quite nerve wracking

[Ernie]

I am so sad to read this news. Thanks for the update.

[cardiactec]

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.

[Laura]

I'm so sorry to hear that. That is very sad news. I remember CaitlinRose's posts as very sweet and positive. Sending much comfort out to her family and friends. Thank-you Megan for sharing this news as I'm sure it is difficult for you. xo Laura.

[Ernie]

Hi,

I just read her post. She was just 22 years old. So young! She was such a sweatheart. What a tragedy!

[cardiactec]

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.......

[mom4cem]

So very sorry to hear of this news Prayers to her family during this time.

[Jacquie802]

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

[MightyMouse]

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

[Lukkychrm42]

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.

[persephone]

Thanks for sharing, Megan. I'm sorry to hear this news. It must be awful for everyone who knew her- you included. I'm sending thoughts to you and her family. Keep talking to us all about her if it makes you feel better.

[Sunfish]

thanks so much for letting us know megan.

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

~melissa

[MightyMouse]

Megan, thanks for keeping us informed.

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

Nina

[bttrflyamby1981]

My heart goes out to her family and friends.

[taylortotmom]

How heart breaking- she sounds like she was an incredibly strong and positive person. Peace and love to her family.

Carmen

[Guest dionna]

may God bless her and her family and friends.

dionna

[morgan617]

I didn't know caitlin, but it sounds as though she was a beautiful spirit. My thoughts and prayers are with her family....morgan

[DancingLight]

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

[Tessa]

I have not had the pleasure to know and share some postings with her, I am very sorry about this. It is a sad news for all.

My heart and prayers are with her, her family and friends.

Love,

Tessa

[Rachel]

Thanks for letting us know, Megan.

Caitlin will me missed and remembered by many. My thoughts and prayers are with her family.

Rachel

[futurehope]

I appreciate you sharing this with us, Megan;you must have had some sort of relationship with Caitlinrose.

What a blessing to have had such a lovely, caring person to grace our forum!

Rest in peace, Caitlinrose!