When a usually healthy, Aussie female in her mid 20s is diagnosed with the life-changing, debilitating illness, Mixed Connective Tissue Disease (MCTD) she gets on with it! This is an honest look at this rare auto-immune disorder that isn’t always pretty but doesn’t have to mean the end of living a fun and fulfilling life. I want to show that sometimes there are tears and frustration but in life you just need to take the hand you’re dealt. I’m young and coping…and this blog is to share my experiences and invite others with auto-immune disorders to contribute as well.

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8 Responses to “About”

  1. adrian said

    Hi,

    You have probably had many, many people suggesting treatments. But have you looked at your diet? I’ve heard quite a few people having success through elimination diets similiar to removing foods for celiac disease (another auto-immune disorder) There is some science out there about the effectiveness of diet (particularly removal of grains and dairy) on aoto-immune disorders. Professor Loren Cordain is the man to look up if you are at all interested.

    regards,

    Adrian

    (I found your blog via Max Brown on facebook)

    • Hi Adrian,

      Thanks for your comment. I have had people recommend diet changes to me, at the time I just needed an instant fix which is what I get with the prednisolone (steroids) but they’re no good long term. I will look up the doc you recommended…thankyou. It probably is time I start looking at alternative therapies.
      Does someone you know have an auto-immune disorder and this has worked for them?
      Naomi

  2. Allyson said

    Hi,
    I’m not sure how recent this blog is, but I’m hoping pretty recent! 😛
    Anyway, I have MCTD to, but I don’t think I have any symptoms, I may have had this since I was a child, but I was diagnosed last year when I was 17 and had low iron and the doctor found MCTD too. I was wondering, do you get purple under your eyes, near the bridge of your nose? I noticed its darker when I’m tired, but its always there. I can’t really find anything on Google, so I thought I’d ask someone who has this disease. I refuse to go on steroids for this, last time I did I put ten kilo’s on in two-three weeks! My hands and feet are also colder than the rest of my body, do you think that’ll be connected to this disease? Sorry if I made you uncomfortable. Good luck! I hope your symptoms ease soon!

  3. Hi Naomi after waiting and being messed about I am going to finally get my second opinion from a new Rheumatologist. I will keep you posted but hopefully she will not just look at my blood tests which didn’t flag up much but my symptoms. Which include mini strokes, pulmonary embolism, facial paralysis, constant mouth ulcers, cold sores, worsening eyesight, night sweats, joint pains, muscle pains, poor balance, worsening memory and just new atrial fibrillation of my heart. All of this and the first Rheumatologist said was I mentally ill as I was crying when he told be I just had a damaged knee!! I was toldby dermatologist I had MCTD but she could not diagnose as it had to be done by Rheumy. I am on no medication just loads of pain meds including co codamol, amytripliline, volterol and tramadol. I will let you know how I get on. I was a trainee nurse as was my hubby. We brought up two kids with aspergers and now it was our time. Off course had to leave my training as did my hubby who now cares for me. I am in a wheelchair now as well. Your blog keeps this little scottish lady going strong. 43 but feeling 93. Blessings Yasemin Ruth

  4. Hendrieke Wassenaar said

    Hi Naomi, Don’t mind my Englisch language, I am a dutch ‘girl’…. Today I read your article in the ‘NVLE Venster’, the magazine in Holland for members with MCTD, lupus or sclerodermia. I have MCTD like you, dicovered whem I was 35 (now almost 39) and I have the same problems you described. Here in Holland it’s also difficult to find people with simulair problems. I also have de muscle pains (high CK), the joint pains, raynaud’s and so on, no red face but on my back ugly sclerodermia places…Unfortunatly sinds 2010 I’m not able to work for the time beiing I hope, I had a nice job before as Human Resource Advisor. I had a little sun when I got sick (he is now 6 years old) and the energie it took to raise and handle him costs a lot of energie but it was all worth it! Even though I was very sick we decided we wanted to have another baby so I refused to take MTX. The last views yearts I practicly lived on prednison, 20 mg for half a year and before and after that 10 mg. After our baby-daughter was born in december 2010 (unfortunatly premature because of pre-eclapsy) and when I was stopped breast feading 7 months later I started MTX with luckaly good results. Now I’m looking forward to getting better all the time so maybe it will be posible in the future to sport again or work in de garden maybe working in my profession…I see a lot of myself in your story, very interesting to read! I will look you up on facebook Greetings Hendrieke

    • Hi Hendrieke, lovely to get your message and so glad you saw my interview in the magazine. I’m so happy for you that you have been able to have children and seem to be doing ok…although sorry you can no longer work. I hope my blog gives you a bit of insight into the world of another mctd patient.
      Look after yourself
      Naomi

  5. Hendrieke Wassenaar said

    Hi Naomi, I wish the same to you! I recognize mysef in your story and that is nice for a change, with this seldom disease this is the first time I see a story from someone so simulair to mine. In holland there are only about 500 patients with MCTD and only 20% of them have the muscle problems also…
    Even though live is not wat it was before I also like to look at the bright sight of it and I’m glad I’m able to do that. The way I read your story, you’re also like that.
    Enjoying the sun when it finally starts to shine after a long winter (the place you live has probably always a warm teperature..), looking at happy children, when I’m able to cook a nice meal for friends and in better times when it’s easier to do my hair;-). Although the illnes has took al lot from me, it has given a lot too: To be more able to enjoy little, simple things in live.
    I’m very hopefull for the future, have a lot of trust in it. I think that one day I will work and be able to sport again (one way or another, I was thinking to try thai chi for example). When our youngest child goes to school there must be more energy left for me I guess;-). Have a nice weekend and take care, Hendrieke

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