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Specialist in Morphea

morphea specialist

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#1 debyjoyz

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Posted 06 April 2015 - 02:02 AM

Hi everyone,

 

I am new to this forum and I'm so thankful that I found this website.

 

I was diagnosed with morphea 10 years ago. I have seen 5 doctors (Dermatologist) and none of them were able to help me. I know that there is no cure for my condition but I am hopeful that the progression will somehow stop. I have a patch on my left cheek which started 10 years ago and now it is getting worse. A year ago, I noticed another patch on my neck. 

 

Does anyone know a good doctor in Sydney who specialise in Morphea? I tried searching on the internet and most doctors are only specialised in Skin Cancer and Psoriasis....

 

I am hoping to finally see a good doctor who can understand my condition. My disease has been impacting my whole life for a while. It is causing me depression and loneliness...

 

Thank you.

 

Debbie



#2 Joelf

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Posted 06 April 2015 - 09:27 AM

Hi Debbie,

Welcome to these forums!

I'm sorry that you have been suffering with Morphea for the last ten years. It must be very debilitating and I'm not surprised that it's making you feel depressed and lonely. I do understand as I think anything which affects the way we look and how we feel about ourselves, impinges on our quality of life.

We have two links to Scleroderma specialists which I hope will be of use to you. This one is to our ISN Guide to Worldwide Scleroderma Experts and the other is to the Scleroderma Clinical Trials Consortium (just scroll down to the fifth entry.)

Now that you've joined our community, I do hope that you will continue to post and let us help you as much as we can.

Kind regards,

Jo Frowde
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#3 debyjoyz

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Posted 07 April 2015 - 12:24 AM

Hi Jo,

Thank you for your response and for the information that you provided. I really appreciate it.

I feel a lot better now and glad that I finally found a community that can understand my condition.

Thank you so much from the bottom of my heart. I will keep you posted and stay active in these forums.

Cheers,
Debbie

#4 Shelley Ensz

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Posted 08 April 2015 - 01:54 PM

Hi Debbie,

 

Welcome to Sclero Forums!  I'm sorry you have Morphea.  The good news is that morphea is perhaps the most treatable form of scleroderma.  As I'm sure you know (but just for newbies with morphea who stumble across this thread), many people with morphea just have one or two rather inconspicuous patches, that don't worsen or spread significantly, and that it often fades on its own within three to five years, even without any treatment. 

 

However, then there are people who have more significant involvement. Perhaps it is just a patch or two, but in very visible places, just as the face. In children, patches sometimes occur over a joint and if the patch goes deep, it can even impair the growth of a limb. Therefore, treatments for morphea range from nothing at all, particularly for those with the small few and well obscured sort of patches, to moderate treatment to slow down expanding or visible patches, and then more aggressive treatments such as for children with a patch threatening to impair a limb.  All treatments for morphea are best when used to avert further damage, so the earlier a scleroderma expert is sought out, the better.

 

Today, for most types of morphea, UVA1 Phototherapy is generally considered to be the first line treatment. This is very much like a sun tanning booth.  Treatments are just a few seconds (really) and are done several times a week for a few months.  It's entirely painless plus it's done to the whole body so you get a delightful suntan as a pleasant side effect.  The thing is, it is often quite a chore to find the (few) dermatology offices that have UVA1 booths. But, when you do find them, often their dermatologists have some experience with treating morphea. Keep in mind if/when you are calling places about this that UVB treatments are not the same as UVA1, and really try to find the UVA1 facilities.

 

Since you have facial involvement, you really want to consult closely about that. Sometimes the UVA1 can darken the spots. If your face one is stable (not currently expanding) then you may want to use a face shield for your treatments.

 

Read more about your treatment options at Morphea Treatments, and please let us know how things go for you as you are tracking down an expert or phototherapy place, etc.  We hope to hear lots more from you! 

 

: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.

#5 Amanda Thorpe

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Posted 12 April 2015 - 01:08 PM

Hello Debbie

 

I have both systemic and localised scleroderma with morphea and bullous morphea. My patches of morphea are rather hard to detect now because most of my skin on my arms and legs is scleroderma brown! The blisters are a nuisance and are on my shins, they're very painful and when they burst can ulcerate.

 

Morphea can burn itself out even without treatment but as Shelley has already said there is a preferred treatment for it. I am in the UK and there are not many centres offering UVA-1 Phototherapy with none anywhere near me. Having said that, for me, morphea has always been overshadowed by its systemic counterpart.

 

Take care and keep posting.


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#6 Shelley Ensz

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Posted 13 April 2015 - 03:30 PM

Hi Debbie,

 

I am really glad you joined us. I was just thinking, treatments can certainly help your morphea and probably even stop it from spreading, too. But I am hoping at the same time that you already have, or are developing, a plan to cope with the emotional fall out over it.  It's entirely normal for us to isolate ourselves and become depressed over any illness, and all the more likely when the illness affects our looks or our activities.

 

However, just because it happens, and its a natural course, doesn't mean it has to stay that way!  It's possible and even necessary to have morphea -- even on your face -- and still be happy and with a fulfilling and broad social circle. Many people even with the harshest form of en coup de sabre -- and other figure-altering conditions, such as survivors of fire or amputations -- have established great careers, married, had children, etc. The thing is, it's neither easy nor natural to do so. It typically involves counseling, medications, lifestyle changes, support networks, and the simple sheer daring to believe that what we want is possible.

 

You've made the perfect first step by joining Sclero Forums, and starting to seek out an expert and some appropriate medical care. I'd like to suggest that you don't stop there!  You are entitled to a happy, exciting, and fulfilling life, chock full of all the happiness your heart can contain. You can be an inspiring example to others with morphea, and a living embodiment of "when life hands you lemons, make lemonade!"

 

If you aren't yet fully addressing the issues of isolation and depression (or anyone who is reading this is in a similar bind), then I encourage you to set an appointment with your primary care doctor, right away, to get an evaluation, referral, or care plan.  There's not just a light at the end of the tunnel for you -- there is also fun, laughter, friendship, love, and adventure!  The world and its many joys are not made only for the Perfect People.  In fact, I daresay, us imperfect ones often find much more true joy and satisfaction in life, probably because it doesn't just fall in our laps.  We have to really dig for it, which makes it all the more precious, and all the more real.

 

And we'll happily be here for you, all along the way, as you now begin healing your skin, and your heart, and your life. No more regrets. You're in a safe place now, and we'll all just move forward from here, okay?

 

: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.





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