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29.03.2014
Send Home Our method Usage examples Index Contact StatisticsWe do not evaluate or guarantee the accuracy of any content in this site. If you have ANY type of auto-immune issues, you MUST talk with your physician and please use this information as only that… information and not advice or medical orders.
All the changes that come with pregnancy have a huge impact on someone with lupus or other auto-immune issues and so it is very important to discuss with your physician (or team of physicians) when it is safe for you to try and become pregnant. All lupus pregnancies are considered high-risk, and therefore you will be referred to a high-risk obstetrician and a perinatologist (basically a physician specifically for the baby during your pregnancy).  You will also probably need to see your rheumatologist more often. Preterm delivery – about 50% of pregnancies in Lupies will result in preterm delivery because of lupus complications. Some women see improvement in their lupus symptoms during pregnancy.  And while flares are reported in about 30% of Lupies, most of them are mild. April 11, 2014 by erincredible Leave a Comment 322,000.  That is how many people are said to have lupus in the US. The first time someone gives you a look that says they don’t believe you when you tell them you are tired. Or maybe they cut you off mid-sentence when you try to explain a frustration with your illness. When the pharmacist is practically tsk’ing out loud as you hand over your prescription for pain medication.
You have a rash, headache, and fatigue all in one day and you have zero reasons to get out of bed. What was your first thought when you found out about your Lupies diagnosis?  If you took some pathology in school you might have known a little bit, but most people have no idea what lupus is.  Your loved one may be having some frightening signs and symptoms, but the diagnosis can be even scarier.
78% of family and friends of those with lupus describe themselves as “very supportive”, however only half of lupus patients feel that they are “very supportive” and only 33% of their doctors feel they are.  Unfortunately this says a lot about how family and friends of patients do not really understand or realize the severity of lupus. Today’s Prompt: If you could go back in time and talk to yourself (or your loved one) on the day of diagnosis, what would you say?
Try to find out all the aspects of the care they need day to day, and just keep it filed away in the back of your head. Create a “care page” – a list of your best resources that someone who is newly diagnosed could go to when starting to advocate for themselves or a loved one.
Have you been newly diagnosed with Lupus? Check out these resources I found helpful in my own journey!
Leave a comment with any great links or books on Lupus or autoimmune diseases that you would recommend! Enter your email address to subscribe to this blog and receive notifications of new posts by email.


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I was diagnosed in January of this year with MCTD, after a year or so of growing symptoms (Reynaulds, aching joints etc) I am a working mum with 2 boys, so my days are fairly hectic. My story begins in 1987 but probably goes back a lot further because of other issues that surfaced in my teens.
When checked, Shutterstock's safe search screens restricted content and excludes it from your search results. Lightboxes allow you to categorize groups of photos and send them to your friends or colleagues. Possible health issues you may have to deal with or treat first?  Hypertension, antiphospholipid antibodies, low platelets, blood clots, kidney or blood sugar issues.  The general rule of thumb is to wait until you have been healthy for at least six months before trying to conceive, this will give you the best chances of having a flare-free pregnancy. There are some medications used to treat lupus that cause minimal harm to your baby during pregnancy as they do not cross the placenta.  If you do encounter difficulties, your physicians may discuss some of these possibilities with you. But according to a study from 2012 there is a giant communication gap between lupus sufferers, caretakers and physicians.  We all need to work together to fix this problem. This person will be dealing with this disease for the rest of their life.  How are both of you going to deal? There is a relentless battering of varying degrees of  illness, caretaking, doctors visits, different diagnoses, worries, life changes, and a multitude of unknowns. 72 % of doctors said they were not aware of the severity of their patient symptoms.  72%!!!! They may not need much help now, but it doesn’t take long for lupus symptoms and the need for more involved treatment to change.
I still haven't got a diagnosis for MCTD, but my rheuma specialist has suggested it after many years of different tests. Hoe werkt het en krijg ik het vergoed?Een forse boezem kan zowel psychisch als lichamelijk ernstige klachten veroorzaken. Healthy pregnancies are possible with lupus, it may just take a little more work to get that baby safely in your arms!
Do some research on what emotional effects they may be feeling, and how you can help them to deal.
If they go into a flare, they may need you to get the right medication for them, help them with an injection or with some other aspect of their care.
Started with flare ups after activity, sore joints and muscles, feeling sick, bloods abnormal and high CRP and ESR, symptoms pointed to lupus.
It's nice to know there are others out there in the world who could relate to what has become my life.


Though there is so much more research  needed to be done, please find out as much information as you can on your own.  It will help you to understand where your Lupie is coming from, what to expect, and to also help educate others. It is always better to know ahead of time how to do what they need, rather than learn on the fly!
When I couldnt take the pain anymore as it was constant, and even just turning my head to the side caused severe pain. At the beginning of the 2013 year I noticed I was having really bad knee pains that would last for a while.
Doctor nightmare for some years, the usual, it's just your thyroid and you have fibro, maybe you have narcolepsy, others haven things worse than you blah blah blah. Although I have frequented lupus and MS boards over the last 9 yrs and had wonderful support. When I finally went to see my doctor, he moved my leg around to see how my knee was working.
Met andere woorden: MCTD heeft overlappende kenmerken van soortgelijke ziekten zoals lupus en sclerodermie, een minder bekende reumatische aandoening. 0 Topics0 PostsMCTD & childrenDo you have MCTD & children or do you have children with MCTD. Bij iedere patient uiten de ziektes zich anders, de grote gemene deler is vooral de immense vermoeidheid. Here you can post about someone you know being in hospital or post about yourself being in hospital.
0 Topics0 PostsI know someone who is in hospitalPost your support for someone you love who is in hospital. Prednison bij MCTD Er zijn periodes waarin Boersma klachtenvrij is, maar de ziekte kan ineens ontvlammen. 0 Topics0 PostsFirst time experience of a painful treatment or operationPost here if you're having a painful treatment or operation for the first time so we can show our support. 0 Topics0 PostsMCTDADo you have an issue with the Mixed Connective Tissue disease Awareness website?



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