Mastocytosis

[zoedish]

I'm Candi's sister, Zoe. I made this video. She's five now and she still has masto of course, but she's handling it well! We've just about mastered keeping her from flaring up these days and she's really happy. She's spunky, sweet, and sometimes a little crazy like any five year old can be. She just started kindergarten this week and she loves it so far! Thanks to all of you for your support and for those of you that have masto or loved ones with the disease just keep up hope!

[mommy2girls3]

My oldest daughter who is now 10 was diagnosed with this disease when she was 10 months old. We actually got her diagnosis on 9/11. That was a hard day all around for us. She suffers from this daily. She's on zyrtec and zantac but as you know they don't help too much. She wakes up nauseas and has stomach pains every morning. She's scared to go outside when there's a lot of bees. I'm trying to help her to conquer her fear. She will go outside easier now than she did a year ago.

[mommy2girls3]

My oldest daughter who is now 10 was diagnosed with this disease when she was 10 months old. We actually got her diagnosis on 9/11. That was a hard day all around for us. She suffers from this daily. She's on zyrtec and zantac but as you know they don't help too much. She wakes up nauseas and has stomach pains every morning. She's scared to go outside when there's a lot of bees. I'm trying to help her to conquer her fear. She will go outside easier now than she did a year ago.

[Hipboy125]

since she should be about 4 noe... how is she?

[procommenter]

Serums, because they stymie a developing immune system, are the root cause of many chronic (mistakenly labeled: congenital) afflictions: allergies, autism & asthma. The government has made pin cushions of our children.

[RMDelete]

Your daughter is beautiful you should rejoice that she is alive and has an illness that will not terminate her life within a year, she will grow and learn to live with this condition as many people with similar conditions have, this video made me very sad I almost believed this video was an "In Memory Of" video.... what will you do when she is older and stumbles across this video? It almost feels like you lament having her with this condition. Be happy for what you have been blessed with.

[asapdiva]

@RMDelete so because a children is not terminal, you can't ask for a cure? Get over yourself.

[RMDelete]

@asapdiva what the hell are you talking about? Please read and fully understand whatever you plan on responding to before responding so crudely.

[zoedish]

@RMDelete the video is not really about being depressed and feeling that her life is over because of this disease. It was really meant to help spread awareness of what mastocytosis is. I know it's not really a super uplifting video, but I definitely don't mean to express that we have no hope for her. she's definitely leading a really normal life. I love my little sister so much and we're so happy to have her in our lives. :)

[momimas]

My friend all I can do is pray for you child. Because that at times is stronger then any medicine.

God Bless

[annaboo2006]

My son 3yr old son Jake also has Masto..hugs...lets hope they find a cure x

[Poetessa2]

I too suffer from masto and have had it since I was a baby but was only diagnosed 2 years ago...it's such a horrible disease but for a baby it must be so hard and for the family to, feeling helpless! I hope she is doing better now and I wanted to wish her a happy birthday, she is born on the same day as my daughter!

Healing hugs to you!!

Leslie

I put my own little videos up here to help spread the word, we must all do our share!!

[zoedish]

@Poetessa2 Thank you for the support!!! I'm glad that you're well and that's awesome they have the same birthday!!!

[SweetieMyHorse]

she is the cutest little baby :)

[clauqui]

Yo tengo mastocitosis diagnosticada desde abril de este año.......... solo pueod decire.. se puede.. si se peude....

cuentes conmigo para lo que necesiten... besote enorme a cada uno

[meekyrox]

ahhahahahahahhahahahahahahahah­hahahahah this is so funny fuck em

[spritefish]

troll.

[mama4loca]

My son has this and is now 7. He was pretty severe as a baby and now the spots are fading and the itchiness is getting less and less.He probably will end up outgrowing it by puberty(some do)The only thing that happens now is if he bumps a spot, the other spots raise up and blister, but I am so grateful he is doing better!

[zoedish]

@mama4loca I hope he does grow out of it!

[RealMusicValue]

this is really sad . :(

and it makes me angry as hell thinking that some of her life is ruined..

And also these people sayin may god bless you -_- GO SOMEWHERE ELSE WITH YOUR GOD! according to you people he made her like this in the first place. Don't EVER mention this "great god person" to me!

[Cocoapuff68]

I have Mastocytosis also and I am newly diagnosed since June 2009...I Hope everything goes well for your family ..this is an aweful disease to have and I am a shocker ..which is just bad all around...I will do everything I can to help get word out about this disease and what it has done to the lives we had!! Thank you for doing what you have done with you slide show it is great!! Prayers are with you all...Colleen Miller, Massachusetts

[Santiagosunshine]

I have mastocytosis as well and I am just beginning to learn about the disease. I was diagnosed when I was 13 and am now 23 and feel like I know practically nothing about it due to the very limited information there is.

[SpotsDontDefineMe]

During the 10 year time frame that you've had masto, have you had many or any related health problems that you are aware of? Also, I was wondering if you've been on any medications to treat mastocytosis?

[SpotsDontDefineMe]

Oh yeah, it may not be clear who I was addressing... : My questions about the 10 year masto was for Santiagosunshine :- )

...but if anyone else has something to add regarding their own masto or UP experience, please post your comment.

[JK11451]

I am so sorry that you child has to go through this. I hate that children have to deal with stuff like this, if I could I would trade places with her. Your in my prayers.

[TheBlib223]

god bless her

[Andrewthevideogamer]

May God heal you!Poor thing doesn't need that.

[MrElectronicReviewer]

may gods blessings shed down on that poor child

[masto4acure]

You have a beautiful daughter. I feel for your suffering and hers, as I also have Mastocytosis. Thank you for bringing awareness to this disease by posting this beautiful video.

[EliteCrits92]

God bless America

[kimbabaa]

Hello. I am 34 and I aslo have masotcytosis, since I was 3 months old. during my childhood it was very difficult because nobody knew what I had so I went through many treatments and even surgery. But now I am much better, I have learnt to live with it and if I am careful I can have a normal life. So, dont worry too much, she will get better.

[SpotsDontDefineMe]

kimbabaa, did your masto skin "markings" change as you got older? I developed adult masto & never experienced the blister type markings I see in pix & vids of pedi masto. Any idea what percentage of children actually outgrow it? As, I've been informed by docs that "most" kids no longer have masto once they reach puberty (or b4). Sorry about your trouble being diagnosed early on. I'm thankful (& sorry) for those who had it before me bc more is now known bc of them...still more is needed.

[SpotsDontDefineMe]

I also had trouble being diagnosed.. nothing like your experience though.

I would just get these puzzling looks and was told things like.. "Well I don't know what it is, but I can tell you it's not harmful," or "Can I see your rash again? Hmm.. well that's quiet significant, hmm.. I dunno"

[ozorkie]

i will pray 4 her and ur family God bless her

[fatmon]

You have a wonderful beautiful baby!

[cocoforlove]

my dearest blessings goes to your beautiful baby god bless her

[DarcySparkle]

My heart goes out to you and your little girl! I,too have an incurable skin disease. (Ichthyosis) Maybe you could could check out the foundation for support? It is called F.I.R.S.T. (Foundation for Ichthyosis and Related Skin Types)Maybe Mastocytosis would fall under "related skin types"? Your daughter is beautiful! :) Have a good day!!!

[cabooserocks117]

I HAVE MASTO.

[gabriellaexoh]

shes a beautiful girl.

[clandestinecarl]

I've had systemic mastocytosis (or some mast cell disease, details are fuzzy) for the past year. It sucks, I can barely go out in the heat without itching and feeling like i'm going to faint. Goood news though, I'm getting on a drug called xolair, which could solve everything, because it appears that my case in IgE mediated. I encourage others to try to go on this drug as well.

[pbfreak200788]

I've had systemic mastocytosis since I was 3 months old... what's the medication your on called? because I've been on 7 medications since I was 10 (and I'm 19 almost 20 now) and I still go in to anaphylaxsis... so maybe if the medication your on is working so well maybe it might help me too!

[clandestinecarl]

its called xolair. its insanely expensive so to get on it for masto you have to either have really bad asthma and get insurance to cover it, fool the insurance company into thinking you have really bad asthma so they'll cover it, or just be insanely rich. (its an injection and costs between 15,000 and 30,000 bucks a year)

[MariahVCU]

My 66 year old father has been diagoned with systemic mastocytosis. It came on him suddenly. He has been hospitalized 8 times in two months with annaphalatic shock episodes. None of the current medications are helping. The doctor has suggested xolair. If you or anyone has any information it would be greatly appreciated. I am currious as to your age and if anyone older has received this treatment.

[clandestinecarl]

Xolair works for all ages, I highly suggest that you pursue it! My doctor has told me stories of people who have been having around 20 anaphalactic episodes a year, but after taking xolair, they had none. I too had no beneficial results from other medications, but after taking xolair, i felt great! It's the closest to a cure-all that is on the market for mastocytosis. As i said before, its really expensive, so you'll have to find a way around that with the insurance companies.

[pbfreak200788]

I've had Mastocytosis since I was three months old...

[xxJayloxx115]

aww she looks like a very brave little girl and i`m shure she is if shes strong now she always will be x

[ByGraceOfGod]

Beautiful Baby. She is special. God is with her.

Have you done any Morgellons research? Doctors will not diagnose or treat it so it's up to us. Just check it out... please.

[caitlinuva]

I have had UP since I was a baby--I pray for a cure as well.

[maplekid576]

this is the first time when i heard about this disease, but this video made me cry, to see such a beautiful baby with a deadly disease-i'll pray and remember god is at work

[monkeyman01992]

I Had this diease when i was smaller. I am 15 now and still have some of the spots. I understand what you are going through even though my case wasnt as bad as others. Just remember that God is with you

[craby99]

My baby also suffers with this.. God is with us girl and everyone else that suffers from this horrible disease,, God be with you- and your family.. A CURE WILL COME SOON!

[dbootsthediva]

I hope they find a cure for your beautiful baby. But my gut tells me the government

is screwing with our atmosphere with the

chemtrails they are Xing our skies with,

and they have seeded the atmosphere with

metallic oxide silica particles we are breathing in. They have messed with the air

we are breathing. Some of these particles are known to be

non biodegradable

[rjampi]

Any websites, or info as i wish to lean more of the issues you mentioned

[dbootsthediva]

rjampi  Which issues would you like links to?

[dbootsthediva]

I have seen other videos and photos with that type of

red skin. They are burns from their directed

energy weapons.

They look like Microwave Energy burns. Their Microwave Energy and ElectroMagnetic

Energy devices cause Cancer. They also have

the ability to make EVERY TREE A CELL TOWER

Which puts an EM field near our bodies.

Magnetic fields are known to interfere with

our protein and cell processes.

[mesoemo]

I know that there will be a cure!

She's a beautiful baby and I pray to God that she'll be ok!!!

=] we also share the same birthday

[barmybeth]

lets hope we find a masto cure soon! i too suffer from this illness x x x

[freedomslastvoice]

My daughter suffers from a milder form of Mastocytosis, along with mild austistic actions. Broke out with 6 spots immediately following first immunizations due to maybe a reaction or trigger effect from the preservatives. My heart goes out to finding a cure.