I was diagnosed with MCTD when I was 19. I Have it quite severe & find everyday tasks a challenge. The most shocking thing is the lack of information & awareness for this disease. So I have set up a Facebook page where we can get together & talk about our illness with people who understand. I am in the process of trying to start a registered charity/foundation.
My daughter was just diagnosed a few months ago, she is 15. She started having problems at about 11. I have lupus, sharing information like your videp helps people understand something that's not well known. My daughter had 2 surgeries this year on her wrists. You are brave and smart, thank you for your video
Hi Mia. Thank you for your informative presentation. I live in Seattle with my wife of 41 years. We have helped a number of people with auto-immune conditions such as you are experiencing. If you would like some information, simply respond to this comment. I would be happy to talk with you or your parent to discuss my thoughts on your condition.
I have it as well sweetie. it is genetic. It is past down through your family. I understand. don't let it keep you down. Keep up the smile. There is alot you still need to ask and learn.
God bless you- you are a very sweet girl and I am sure are an inspiration to many- stay well and keep up your positive attitude- this was very informative- I don't know if this is what I have yet?? but I am not handling it as well as you and I am 49.
You are a very brave, sweet girl. I am also Asian and developed scleroderma, which has been shown to be more prevalent due to a possible genetic disposition. Please contact The Road Back Foundation. They will save your life, like they did mine
Mia, you are such a brave little girl! And I am happy that you understand your disease well and explained it better than our Rheumy explained it to me! My 14 year old niece has MCTD (diagnosed about a week ago) we are actively looking for support and as information on what to expect and how to keep things as normal as possible. Thank you for posting this video. I hope all is well with you. Take care my dear. You give me hope.
@theburg727 I was diagnosed when i was 12. I had to have emergency heart surgery... I had over 8 oz of fluid built up in the sack around my heart... just make sure she takes her meds and does what the doctors say... i stopped taking mine when i was about 14 and i got really sick... my email is MrsDion@live.com... have her/you/her parents email me and i can give you more details about my problems... and what to expect....
I'm 27 and was diagnosed last year with Connective Tissue Disease. I have symptoms of RA ( erosive arthritis), Fibromyalgia, Chronic Fatigue and thryoid disease. I'm so proud of you for raising awareness! Thank u! CTD's are so rare, and difficult to live with; it's very helpful when people at least have an understanding of the difficulties it causes those diagnosed. If I can assist you in your mission to raise awareness, please let me know. I would love to help!
hang in thier honey, I also have this disease, I have Mixed Connective tissue Disease and Lupus...its a hard thing to live with, keep your head high, and I applaud you for making this video and trying to educate people on this...your a very strong girl! :)
You precious angel, for making this video. I am old enough to be your Grandma, and I also have this diesase. I want to send you all my love, from Las Vegas, for making this video. You really did a good job. I hope you feel better.
sweetheart... your so young; bless your heart:) I, too have this disease along with some other things. I have Raynauds Phenomenon with this mixed connective tissue disease. I still need to research the disease more. I will have to visit FB. Thank you for the information... Take good care of yourself!
I just found out I have this disease yesterday. I'm looking for information from all over.
MichyGW 1 month ago
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I was diagnosed with MCTD when I was 19. I Have it quite severe & find everyday tasks a challenge. The most shocking thing is the lack of information & awareness for this disease. So I have set up a Facebook page where we can get together & talk about our illness with people who understand. I am in the process of trying to start a registered charity/foundation.
Search Project MCTD Aware on facebook!!
Abigail xx
projectmctdaware 3 months ago
Ummm I'm Ur biggest fan :p
clute124 7 months ago
My daughter was just diagnosed a few months ago, she is 15. She started having problems at about 11. I have lupus, sharing information like your videp helps people understand something that's not well known. My daughter had 2 surgeries this year on her wrists. You are brave and smart, thank you for your video
MegaJosephine88 7 months ago
I am so sorry you have this at such a young age, i have the same thing too but I am much older.
sbasanty 9 months ago
You are such a brave, beautiful and intelligent young lady. This video is very informative. You did a great job!
Hope you are well.
JaciB00 10 months ago
Hi Mia. Thank you for your informative presentation. I live in Seattle with my wife of 41 years. We have helped a number of people with auto-immune conditions such as you are experiencing. If you would like some information, simply respond to this comment. I would be happy to talk with you or your parent to discuss my thoughts on your condition.
4WellnessDave 1 year ago
Great job, as usual! I'm so lucky to have you for a daughter. Love, Mom
salski33 1 year ago
God bless you sweets, I live with this disease also and it's no fun. Keep your positive attitude and hang in there. I will add you to my prayers.
Shearhair1 1 year ago
I have it as well sweetie. it is genetic. It is past down through your family. I understand. don't let it keep you down. Keep up the smile. There is alot you still need to ask and learn.
aurorasky73 1 year ago
God bless you- you are a very sweet girl and I am sure are an inspiration to many- stay well and keep up your positive attitude- this was very informative- I don't know if this is what I have yet?? but I am not handling it as well as you and I am 49.
takinaluk 1 year ago
Baby, God bless you. You are soooo strong so you will be ok. Keep that good attitude, you are so precious!!!!
MeTooU2 1 year ago
You are a very brave, sweet girl. I am also Asian and developed scleroderma, which has been shown to be more prevalent due to a possible genetic disposition. Please contact The Road Back Foundation. They will save your life, like they did mine
uwao999 1 year ago
Mia, you are such a brave little girl! And I am happy that you understand your disease well and explained it better than our Rheumy explained it to me! My 14 year old niece has MCTD (diagnosed about a week ago) we are actively looking for support and as information on what to expect and how to keep things as normal as possible. Thank you for posting this video. I hope all is well with you. Take care my dear. You give me hope.
theburg727 1 year ago
@theburg727 I was diagnosed when i was 12. I had to have emergency heart surgery... I had over 8 oz of fluid built up in the sack around my heart... just make sure she takes her meds and does what the doctors say... i stopped taking mine when i was about 14 and i got really sick... my email is MrsDion@live.com... have her/you/her parents email me and i can give you more details about my problems... and what to expect....
MrsDion92 1 year ago
You did a really great job of explaining everything. Please make more videos!
mastuhrodent 1 year ago
I was just diagnose with MCTD. I will keep you lifted u p in prayer.
NAVONESS2 1 year ago
Hi Mia!
I'm 27 and was diagnosed last year with Connective Tissue Disease. I have symptoms of RA ( erosive arthritis), Fibromyalgia, Chronic Fatigue and thryoid disease. I'm so proud of you for raising awareness! Thank u! CTD's are so rare, and difficult to live with; it's very helpful when people at least have an understanding of the difficulties it causes those diagnosed. If I can assist you in your mission to raise awareness, please let me know. I would love to help!
Stay strong!
WovenNSpun 1 year ago
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WovenNSpun 1 year ago
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WovenNSpun 1 year ago
I actually have the Reynauds phenomenon too. I take Plaquenil too. Thank you for all of the support and comments.
bail9865 1 year ago
Hi Mia!
I have that disease, and also Reynauds. Mia, I discover that the mercury that I have in my body could bethe origin of make one of this disiease.
Iam planning to remove my amalgams with a special dentist , and cleaning my body with natural remedies.
Thank you for your orientation, yu are so pretty. I wish the best for you
c925271 1 year ago
you need to take plaquenil (hydroxychloroquine)
islamrapesthemind 1 year ago
hang in thier honey, I also have this disease, I have Mixed Connective tissue Disease and Lupus...its a hard thing to live with, keep your head high, and I applaud you for making this video and trying to educate people on this...your a very strong girl! :)
ILUVHORSES1981 1 year ago
You precious angel, for making this video. I am old enough to be your Grandma, and I also have this diesase. I want to send you all my love, from Las Vegas, for making this video. You really did a good job. I hope you feel better.
pennyitforward72 1 year ago
sweetheart... your so young; bless your heart:) I, too have this disease along with some other things. I have Raynauds Phenomenon with this mixed connective tissue disease. I still need to research the disease more. I will have to visit FB. Thank you for the information... Take good care of yourself!
codecherry57 1 year ago
thank you so much to everyone that watched this, I will keep posting and hopefully people will keep watching them too.
bail9865 1 year ago
Great Job I am posting it on my facebook page.
tysmarc 1 year ago
Great job Mia, keep spreading the word and I'll see you at camp. ~Kim
LupusButterfly98 1 year ago