Who is affected by this disease?
|
This is as blunt as I say it. If you have ovaries attached to your body and can withhold a baby that is who is affected. There are no specific race you have to be to get this very rare disease. It is not selective on who or what you are. If you are a woman you are considered a risk option for MCTD. It is a 97% rated for women over men which is 3%, men are affected as well. Diagnosis starts around ages 20s to mid 30s. |
|
What exactly is MCTD?
|
From ClevlandClinic.org
"Mixed connective tissue disease (MCTD) is a rare autoimmune disorder. An autoimmune disorder is one in which the immune system mistakenly views the body's own tissues as “invaders” and attacks them.Mixed connective tissue disease has features of three other connective tissue diseases:" 
Image Clickable!
|
 Link Clickable ^_^
Mixed connective tissue disease features signs and symptoms of a combination of disorders — primarily of lupus, scleroderma and polymyositis. For this reason, mixed connective tissue disease is sometimes referred to as an overlap disease.
In mixed connective tissue disease, the symptoms of the separate diseases usually don't appear all at once. Instead, they tend to occur in sequence over a number of years, which can make diagnosis more complicated. Early signs and symptoms often involve the hands. Fingers may swell up like sausages, and the fingertips might turn white and become numb. In later stages, some organs — such as the lungs, heart and kidneys — may be affected. Mixed connective tissue disease occurs most commonly in young women. Treatment often includes drugs such as prednisone. From Mayo Clinic Staff |
How was it discovered or diagnosed?
|
Discovery:
1972 it was originally called the Sharp Syndrome. Testing through blood samples when asking for a physical for your health: ANA (Antinuclear Antibodies) is the main test for Lupus ranked 1-10; RNP (RiboNucleoProtein) is tested for Mixed Connective Tissue Disease. This is chosen by your Primary Care Physician first the ANA and if its positive the first time will be retested again to confirm, if it is a negative which I had one positive and one negative will be referred to a specialist through your health insurance company approved, your specialist will run another ANA test and an RNP test to rule out all factors depending how many blood samples they need. I have had over a dozen blood samples taken out of me within 4 months which made my 6th test negative because I have out too much blood. It was considered inconclusive to the point where I was sent to a referral specialist to get an answer of what was wrong with me. Which was first thought Lupus, and Fibromyalgia and finally Mixed Connective Tissue Disease. **When testing ask for a copy of your blood lab results so you can understand what your dna structure has.** 
Lupus:
"Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years." - Lupus.org
Sjogren Syndrome:
"A chronic autoimmune condition characterized by degeneration of the salivary and lachrymal glands, causing dryness of the mouth and eyes." Google Search 
Image Clickable!
|
 ^^Clickable Image Link^^
Rheumatoid Arthritis:
"Rheumatoid arthritis (RA) is an autoimmune disease in which your body’s immune system – which protects your health by attacking foreign substances like bacteria and viruses – mistakenly attacks your joints. The abnormal immune response causes inflammation that can damage joints and organs, such as the heart. Early diagnosis and prompt treatment is the key to preventing joint destruction and organ damage." -Arthritis.org 
Image Clickable!
 Link Clickable on Image!
Scleroderma:
"Scleroderma, or systemic sclerosis, is a chronic connective tissue disease generally classified as one of the autoimmune rheumatic diseases. The word “scleroderma” comes from two Greek words: “sclero” meaning hard, and “derma” meaning skin. Hardening of the skin is one of the most visible manifestations of the disease. The disease has been called “progressive systemic sclerosis,” but the use of that term has been discouraged since it has been found that scleroderma is not necessarily progressive. The disease varies from patient-to-patient." -Scleroderma Foundation Raynaud Syndrome:
"A disease characterized by spasm of the arteries in the extremities, especially the fingers ( Raynaud's phenomenon ). It is typically brought on by constant cold or vibration, and leads to pallor, pain, numbness, and in severe cases, gangrene." Google Search 
|
If you are really curious to find out more
don't be afraid to Google it!
Are there levels of severity?
|
Yes there are. From mild to severe.
Mild: you are the lucky ones, it is very common when it comes to being diagnosed! Make sure you listen to the word mild. Moderate: it is not too severe but it has to be managed. Severe: 4% Fatality (extremely rare!) |
|
Are there risks for family planning?
|
Yes there are. If you are serious about considering adding additional family members to your household. Consider all the risks and speak with a professional physician that is willing to work with you and give you an honest opinion.
Giving you all your options on how you can have a successful pregnancy because the risk can lead to respiratory problems along with kidneys. Make sure you have your disease under control to make that option and if you can not there are other options of adoption of human children and/or animals that really need a loving family. |
|
Okay so is it treatable or curable?
|
No there is no cure for this disease. Because I have it and there is a way to treat this disease. Depending on your symptoms and yours alone symptoms. Your professional physician or referral specialist that specializes in this area alone can give you treatable medication that you have to take to keep this disease under control so you can live a more comfortable life. Possibly keep a job part time depending on your work, weather (does affect the disease in many ways), family lifestyle, and etc. I can not tell you how to live your life only you can do that.
The great thing is that it is not fatal but treatable with medications as I mentioned prescribed to you alone. Do not share it with anyone else because it is meant to treat your symptoms. How is this disease treated? As I mentioned depending on your symptoms it is normally treated as lupus because it is an overlap disease. The symptoms do not show up all at once because it takes time to identify what it is. The tests that were performed on myself were through blood work. The blood tests that are commonly used are an ANA (antinuclear antibodies) and RNP (anti-ribonucleoprotein) that is structured in your dna. |
Okay when can I cue in the waterworks?
|
Anytime you please. Because its your battle through this. If you need to cry then cry let it all out. We know it sucks ass. Yes I have said it because it does suck ass. Its a hell we have to face everyday it is not a fun disease that was hidden throughout our lives and finally shows up and exposes itself so we can have a physical exam. And end up with the worst news possible that is not a visible disease only felt within ourselves.
|
|
Okay so now what is my symbol?
|
You are a dragonfly warrior not a butterfly warrior.
Colors: Purple and Blue |
Meanings: Why a dragonfly???
-The dragonfly is an insect belonging to the infraorder Anisoptera which is Greek for "uneven wings". An MCTD sufferer always feels "uneven" due to the pain & problems that come with the disease.
-Dragonflies can't walk well despite having 6 legs! It's almost like they have health problems & struggles, that debilitate their movements just like an MCTD sufferer! However despite this "disability" dragonflies are among the fastest flying insects in the world. Their swift & fast movements during flight are what an MCTD sufferer hopes for (ease of movement) with the help of treatment & medication.
-The dragonfly is a beautiful, misunderstood creature, which is very much like an MCTD sufferer. We look healthy but the reality is, we're not & this can lead to a lot of misunderstanding from others.
-The dragonfly represents many different things to many different cultures. Of course there are some cultures that have negative views on them (like most things in life) but I wanted to concentrate on the positive views.
-For some Native American tribes they represent swiftness & activity (which again is what we wish for). For the Navajo (the largest recognised tribe in America) they symbolize pure water. Pure water is the essence of life. We want to have our life back!
The most important symbol of the dragonfly to me that closely fitted an MCTD sufferer was in the Japanese culture:
-Dragonflies have been used in traditional medicine in Japan for centuries. This is linking back to all of the medication that we have to endure over our lifetime.
-They often appear in their art & literature, especially Haiku (Japanese poetry).
-In Japan the dragonfly is a seasonal symbol associated with summer. Summer is almost always associated with happiness & wellbeing worldwide.
Simply put; dragonflies are symbols of:
•Courage - We need courage to face everything that goes with MCTD!
•Strength - We need mental & physical strength to face MCTD every single day!
•Happiness - It is important to always be happy & never give up, no matter what!
-The dragonfly is an insect belonging to the infraorder Anisoptera which is Greek for "uneven wings". An MCTD sufferer always feels "uneven" due to the pain & problems that come with the disease.
-Dragonflies can't walk well despite having 6 legs! It's almost like they have health problems & struggles, that debilitate their movements just like an MCTD sufferer! However despite this "disability" dragonflies are among the fastest flying insects in the world. Their swift & fast movements during flight are what an MCTD sufferer hopes for (ease of movement) with the help of treatment & medication.
-The dragonfly is a beautiful, misunderstood creature, which is very much like an MCTD sufferer. We look healthy but the reality is, we're not & this can lead to a lot of misunderstanding from others.
-The dragonfly represents many different things to many different cultures. Of course there are some cultures that have negative views on them (like most things in life) but I wanted to concentrate on the positive views.
-For some Native American tribes they represent swiftness & activity (which again is what we wish for). For the Navajo (the largest recognised tribe in America) they symbolize pure water. Pure water is the essence of life. We want to have our life back!
The most important symbol of the dragonfly to me that closely fitted an MCTD sufferer was in the Japanese culture:
-Dragonflies have been used in traditional medicine in Japan for centuries. This is linking back to all of the medication that we have to endure over our lifetime.
-They often appear in their art & literature, especially Haiku (Japanese poetry).
-In Japan the dragonfly is a seasonal symbol associated with summer. Summer is almost always associated with happiness & wellbeing worldwide.
Simply put; dragonflies are symbols of:
•Courage - We need courage to face everything that goes with MCTD!
•Strength - We need mental & physical strength to face MCTD every single day!
•Happiness - It is important to always be happy & never give up, no matter what!
Why should I take your word?
|
Because there is so little information out there that lacks updates, organizations, foundations. Its all over the place. I have taken probably a month or two away from myself just to find out more about this disease alone. If you have recently been diagnosed with this disease and distraught over wtf is this disease I wanted to make a basic understanding of what it is. I hope this helped as much as I possibly could find.
|
Any social networks or websites I can visit?
MyLupusTeam.com, MCTD warriors invited!
|
Mollysfund.org
Search for mctd
|
PatientsLikeMe.com
|
Lupus Community
Why am I referring you to websites that are dedicated to Lupus? Because MCTD is an overlap of Lupus and its the only network that is available. If I knew how to create a social network I would make one or cooperate with someone that can build a functional social site like my lupus team.
**images are clickable I figured it out :)**
**images are clickable I figured it out :)**
|
|
|
Who do I credit for my findings? Google Search Engine.
