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 the hell is MCTD?
Mayo Clinic Definition Link: MAYO DEFINITION 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 Diagnosis?How is it diagnosed? Discovery: 1972 it was originally called the Sharp Syndrome. (If you try to find the person who founded this disease all you will get is images of cars.) 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.** Its an overlapping disease!Lupus in Women and Men"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 SjogrenRheumatoid Arthritis
Scleroderma
Raynauds
Are there levels of severity?Risks for family planningYES 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. 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. This is the sucky sucky part that I will add. Since being diagnosed of October 2014 and now it is December 2015. Since seeing a rheumatologist *chuckles sadly* when you see a rheumatologist every I mean every three months you will be giving a blood sample depending how many tubes they will take out of you max four that I have seen and done so far. If you go through your primary care physician to do the blood work they will take out more blood. I am not joking with this. They will to check your thyroid, cholesterol, etc. So if your rheumatologist has a lab and they only need three samples take it. Its bad enough I'm calling it the vampire lab. In the future I also observed others with the same disease stating that they no longer have MCTD in their blood work. Do not absolutely do not think its gone completely. The disease is still there its just not as aggressive as it appeared the first time it will come back again. This is where the word remission comes in that what it does it takes a vacation until future notice. If it is in remission that is great but remember you will have fibromyalgia as a secondary diagnosis you will have your flare days and your non flare days. Okay can I cry now?
Okay so what's 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 recognized 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 & well being 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! 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. Are there any support groups?Support groups are listed on the home page all the way at the bottom.
9 Comments
patrick
4/7/2016 08:34:34 pm
<3!!
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Jenn
8/3/2016 10:40:31 pm
Awesome site! Thank u so much for the info! This does suck ass....& by the way.....my doc is taking 11 tubes of blood....crazy!
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Miriam Jimenez
8/16/2016 08:08:44 am
Yes it's insane.
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Azaima Anderson
8/16/2016 08:36:59 am
Thank you for your clarity and candor. I clicked on the support group link and it wasn't there. Are there any support groups?
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Miriam Jimenez
8/16/2016 11:25:40 am
Thank you for telling me.
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Lorena Wharton
8/16/2016 11:59:22 am
I have had MCTD for about 15 years (since my diagnosis). I had to drive 3 1/2 hrs to a teaching hospital in order to find a rheumatologist who could adequately treat me! Mine has progressed to my lungs (I have interstitial lung disease and was also hospitalized for several days with a large abcess in my lungs). The pulmonary specialist I have that knows how to treat it is also 3 1/2 hrs away! It's very sad when you live in a metropolitan area with 3 major hospitals (one of which is a teaching hospital) and they can't figure a diagnosis out! Thanks so much for your candid description! It was right on point and easy to comprehend! Prayers for all of us with this miserable disease!
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Shannon
8/25/2022 06:05:29 am
I have had lupus, RA, Sjögren’s syndrome Ankylosing spondylitis, MCTD, and fibromyalgia all for years. I was diagnosed with lupus 38 years ago. I also lost my sister to lupus. , Lorena, I am responding to your statement, because I also have interstitial lung disease. I’m actually in respiratory failure. My lupus and autoimmune diseases did contribute to it, but ultimately I caught a virus and was diagnosed with ARDS ( acute respiratory distress syndrome) I was in a coma for five weeks and on a ventilator for almost five months. It scarred my lungs so severely, I didn’t recover fully from this. It was 6 years ago that this happened. I just wanted to let you know you aren’t alone in this. Please feel free to reach out to me. I have my own lupus awareness page, Lupus Warrior Princess.
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Deb
11/16/2017 11:01:48 am
Thank you so much for this great information! I have been "sick" for about 6 yea4s now and just changed my Primary DR.
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Miriam
11/16/2017 04:29:04 pm
I'm glad you are feeling better in the sense where it's not all in your head. I highly sure getting a second opinion. When doctors are not sure with what the actual diagnosis is so they dismiss you making you feel like you're crazy when you're not.
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