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Biomarker for Diffuse Scleroderma skin has been discovered!


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Just been diagnosed with Morphea.


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#1 Mrs Seddy

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Posted 10 January 2013 - 12:49 PM

Hi, Just wanted to say Hi really, have just been diagnosed with Morphea today and thought I would come and have a look around and hopefully get to know some experiences people have had :)
xx

#2 Joelf

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Posted 10 January 2013 - 02:21 PM

Hi Mrs Seddy,

Welcome to these forums!

I'm sorry to hear that you've recently been diagnosed with Morphea. The link I've given you includes one of Amanda's fantastic and informative videos and I've also included another link to a Morphea thread we've had on the Main forum which I hope you'll find interesting and helpful.

Please do have a good look around our site and keep posting with any questions you might have.

Kind regards,

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#3 Amanda Thorpe

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Posted 10 January 2013 - 04:44 PM

Hello Mrs Seddy

Welcome to the forums! After you've had a look around make sure you come back and ask any questions you may have.

As already said I have morphea and bullous morphea which is when it blisters and can ulcerate, it's very rare. My morphea is mainly on my legs and I must have over 20 plaques, must be some sort of record surely!

Take care and keep posting.
Amanda Thorpe
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#4 Mrs Seddy

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Posted 11 January 2013 - 07:56 AM

Thanks ladies!

My main concern is before I was diagnosed my husband and I were talking about having another baby (we have a little girl 17 months) and I just wondered if anyone had any information or experience of pregnancy with Morphea?

Mine seems to be limited to my lower right leg and a few little patches on my stomach; I have been referred to a rheumatologist as well. That appointment is in March with a follow up from the dermatologist in June. I'm 27 and live in Yorkshire :VeryHappy:

#5 Joelf

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Posted 11 January 2013 - 10:12 AM

Hi Mrs Seddy,

As Morphea is a form of localised Scleroderma it is entirely different from systemic scleroderma; although, as in Amanda's case, it is possible to have both types. When you have your appointments with your rheumatologist and dermatologist I suggest you discuss any medication you're taking for Morphea (ie Methotrexate) which could be harmful to an unborn child.

I'm afraid that I'm unable to advise you about pregnancy and Morphea from my own experience, although I expect that we have other members who may be able to give you some first hand information. I've included a link to one of our Patient and Caregiver Stories which I hope you'll find interesting.

Kind regards,

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#6 Mrs Seddy

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Posted 13 January 2013 - 01:21 PM

Yes, I know that mine is a localised condition, but there doesn't seem to be a lot of information around.

I'm not certain if it will spread, or any other effects it may have on me.

I am having a few minor mobility issues with my hands and legs but am hoping that the rheumatologist will have some answers.



#7 Amanda Thorpe

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Posted 16 January 2013 - 06:00 AM

Hello Mrs Sneddy

Oh I love babies! As long as it ain't mine! Seriously I don't know of any reason why you can't have children, but as Jo has said the issue would be any medication for morphea. That said there are topical medications for morphea so maybe you can have both!

Make sure you let us know how you get on with your rheumatologist and that they are familiar with scleroderma. It might be worth ringing and asking how many scleroderma patients the clinic treats...just a thought. There is a list of scleroderma experts on the Scleroderma Society website.

Take care.
Amanda Thorpe
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#8 lexidreamer

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Posted 28 January 2013 - 02:56 PM

Hi Mrs Seddy,

I have just joined too, I have generalised morphea; it covers everywhere except my face. I live in Lancashire but I come to Leeds for treatment. I am 20 years old.

I agree with everyone it's the medication that will be the problem. I was told that if I ever wanted children I would have to stop all my meds then conceive and give birth then start all meds again, and you don't know how ill coming off your meds would make you. I know someone else with morphea though and she has had two healthy children. I see Dr Goodfield at Chapel Allerton in Leeds. He is on the list that Amanda has given you. I have seen Marina Anderson at Aintree and I was referred to Dr Bhushan via Dr Herrick who is on the list; in my opinion Dr Goodfield is the best.

Good luck with your appointment,


Alex



#9 Mrs Seddy

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Posted 10 March 2013 - 06:41 AM

Hi all.

Thanks for the replies! I had my appointment with rheumatology on Monday and was sent for blood tests and xrays on my hands and am waiting for a chest xray. Depending on what comes from these I may need to go for an MRI on my hands.

 

From what I understood this is to check for arthritis and if the xrays come clear then they suspect scleroderma. It's still all a bit guess-y at the moment but I'm not very informed on what scleroderma actually is; I keep reading through the forums and that and think that I have read so much stuff I've had overload and don't really know what to believe and if I'm honest with you all I'm frightened.

 

I don't know what this all means for my future with my family and my little girl.... Just having a little rant as I don't want to let on how scared I am to my family until I know for definite what's going on.... Thanks ladies xx Laura xx



#10 Joelf

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Posted 10 March 2013 - 07:43 AM

Hi Mrs Seddy,

 

I really do understand how worrying and scary it is for you, particularly when you have a young family to consider. It's also very easy for me to say that you shouldn't worry too much until you have the results of your xrays and any other medical tests; you're looking at paranoia-personified in me!!  ;)  The only thing I can tell you is that in my case the diagnosis of Scleroderma was something of a relief to me, as I had foolishly googled "Pulmonary Fibrosis" and scared myself witless! :rolleyes:  Certainly the fear of the unknown is much worse than the disease itself.

 

Unfortunately the diagnosis of Scleroderma is not straightforward; it is such a complex disease and it affects everyone differently, so although I'd love to be able to reassure you, I'm not medically trained and can only reiterate my own experience of the disease. I was fortunate in that it was discovered very early in my lungs and I was very fit at the time, so my treatment was extremely successful. Whereas it would better if I hadn't got Scleroderma, thankfully it hasn't impinged on my quality of life as much as some of our other members (not a day goes by when I don't thank my lucky stars for the excellent treatment I received!!)

 

Although knowledge about Scleroderma is a good thing and I do love to be able to tell my doctors how to do their job, perhaps it would be easier for you if you don't overload yourself with information at this point but are able to wait and see what the results of your examinations and tests are (however frustrating that is) and then hopefully a treatment plan can be worked out to help you.

 

Please do let us know the results of your blood tests, chest xray and possible MRI scan.

 

Kind regards,


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#11 Mrs Seddy

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Posted 10 March 2013 - 10:03 AM

I did so well not to research things for ages, and then I just started to and got  mortality rates and everything.  

 

Like you said,  it is pointless to get worried and stressed until I've had the results so I know I'm being a) a bit previous b) daft or c) both.

Feels better to have somewhere I can come and vent though and not feel daft, and to meet  people who have gone through the same types of things as me.   So just replying has reassured me so thank you xx



#12 Amanda Thorpe

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Posted 11 March 2013 - 05:49 AM

Hello Laura

 

Scared? Yes! Who wouldn't be?

 

I wouldn't recommend looking at mortality rates though. In 2010 I was diagnosed with myocardial fibrosis as a result of the scleroderma so I went a'googling and one site said survival depended on treatment another that it was terminal. Well I am still here  thanks to a treatment in the form of a biventricular ICD.

 

The thing is even the doctors don't like discussing mortality, I know I've asked. Back in 2010 when the myocardial fibrosis was discovered along with the damage it caused, namely serious heart failure, the doctor would not give me even a ball park number. Recently I found out that at that time I actually had about a 2 years life expectancy, well now I am exceeding that and thanks to the treatment will continue to do so!

 

I have a dear friend with the worst case of scleroderma seen by many, including doctors, and she keeps on surviving despite their predictions so I do wonder if all this "how long have I got" is really helpful? Until you, or I, get to the point of only months left I'd just get on with it, I am 6 years after diagnosis.

 

Be afraid, be very afraid of the "ScaryDrama", as my dear friend calls scleroderma. Fear is normal but it passes and knowledge helps it to as does talking to others living with the disease because many people still live long and prosper despite scleroderma's best efforts.

 

Take care and keep posting.


Amanda Thorpe
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#13 Mrs Seddy

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Posted 13 March 2013 - 01:44 PM

Thanks for all your advice ladies, I haven't been googling anymore, I've been a good girl, haha! Sometimes I think all this available information isn't a good thing!

 

Have just got an appointment for a chest x-ray on Tuesday so will see how that goes.



#14 Shelley Ensz

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Posted 13 March 2013 - 02:39 PM

Hi Laura,

 

I agree with the others.  Even though I have no medical training at all, it is my understanding that with morphea, the only possible reason to not have babies would be if you were on certain treatments. So check with your doctor for further info.

 

Other than that, bring on those babies!  Why I'd even crochet a virtual baby blanket for the little one, using my magic wand. :fairy:

 

Congrats on being good and not googling. If you find yourself twiddling your thumbs and wanting to google, replace the urge with googling for healthy recipes, or for inexpensive gift ideas for upcoming celebrations, or even for funny animal videos. Sometimes our brains just need another challenge to work on.  Also be sure to visit our subforum for Fun and Friendship. It is a nice place to escape when we don't want to think about that upcoming test, etc. and you can try to think of an entertaining thread to start there, to keep us all distracted!

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#15 Laura T

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Posted 18 April 2013 - 12:48 PM

Hi my name is Laura Thompson and I'm 30 years old. I was diagnosed with atrophic morphoea when I was just 8 years old. I live near to Warrington in between Liverpool and Manchester UK. Just to give you reassurance that morphoea has never stopped me from having children. I've had it 22 years now and its still active in certain areas. Despite my condition scarring almost every part of my body except my face, I have two little girls age 5 and 2 years and a loving husband who is a dab hand at applying my camoflage make up haha! I've had so many treatments over the years, if you want to know which then let me know and I can tell you but none have worked, its still active to day :-(

I'm currently on methotrexate, but I'm not holding my breath! I cant remember life without it, I've just learned to accept it and get in with my life with the help of camoflage makeup derma colour and my massive collection of cardigans haha! I do also have poly cystic ovaries so I just wanted to let you know that I've gone in to have kids with 2 conditions, hope this helps.

 

Laura T



#16 Laura T

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Posted 18 April 2013 - 12:53 PM

Hi Alex, just realised you have posted too! :D



#17 Laura T

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Posted 18 April 2013 - 12:58 PM

PS:  I'm the other lady Alex referred to with the 2 healthy children. Small world.  Dr Goodfield at Leeds is who I told Alex about and yes he's fab. I'm still under his care but he now liases with Dr Stewart a dermatologist I see at Leigh Infirmary in Lancashire so I don't have to travel to Leeds. Like I said, I'm on Methotrexate at moment but I've not been on any meds for last few years due to having children, breast feeding etc.



#18 Joelf

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Posted 19 April 2013 - 06:19 AM

Hi Laura T,

 

Welcome to these forums!

 

I'm sorry to hear that you suffer with Morphea, but pleased that you're receiving good care and treatment for it from your consultants.

 

Now you've found our forums, please do keep posting and let us know how you're faring.

 

Kind regards,


Jo Frowde
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#19 Shelley Ensz

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Posted 22 April 2013 - 10:01 AM

Hi Laura,

Welcome to Sclero Forums!  I'm sorry you have morphea but I'm very glad that you are setting such a fine example for getting on with a full life, despite it all.

 

How did you happen to develop such a fine attitude about it?

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.