Jplummer1

Newly Diagnosed

5 posts in this topic

Hi everyone
I am 21 and have just been diagnosed with morphea (scleroderma). I have been under investigation for the skin condition for the past year with it gradually getting worse. It is now on my legs, stomach, breasts and now one of my arms. Over the past 3 months I have been gradually losing movement in my hand span and my ankles (I can still do most things but am in constant pain). I got my diagnosis through the post but still haven't seen a doctor about it but just really want to speak to someone that has been through something similar.

I am a trainee Maths teacher and it is just getting harder and harder every day so if anyone has any simple coping mechanism that would also be amazing.

Thank you

Jasmin

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Hi Jasmin,

 

Welcome to these forums!

 

I'm sorry to hear that you've recently been diagnosed with Morphea scleroderma  and being in constant pain can be very wearing.

 

UVA1 phototherapy is now the recommended first-line treatment for morphea; however, our medical page does list other forms of treatment as well, which I hope you'll find interesting and informative.

 

I'm a little bit mystified as to how you can receive a diagnosis for any form of scleroderma through the post, without having seen a doctor! This very complex disease requires specialist knowledge and expertise and we do recommend that our members consult a Scleroderma expert and dermatologist to ensure that you receive the correct diagnosis and treatment.

 

Thankfully, I don't suffer with morphea myself, but we do have many other members with first hand experience, especially Amanda and I'm sure they will be along to give you some more helpful advice.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hi Jasmin,

 

Welcome to Sclero Forums!  I'm sorry you have morphea.  It is nothing to simply suffer from though, as it is a form of localized (not systemic) scleroderma that has proven treatments.  Most especially, UVA1 phototherapy, which is very simiilar to a tanning booth.  With morphea, it is always easier to control progression than to clear up any existing damage.

 

Like Jo, I would urge you to seek treatment with a scleroderma expert that treats localized scleroderma, or at any dermatology center that has UVA1 equipment.  (UVB is more common but a bit less effective for morphea.)  Proper care now is very important and nothing to be postponed.

 

:hug-group:


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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Thank you so much for responding. I have an appointment at the Royal Free in London to see a specialist on the 10th December so hopefully they will be able to give me something that may reduce the pain.

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Hi Jasmin,

 

I'm very pleased to hear that you have an appointment at The Royal Free.

 

I'm a patient there myself; thankfully they are very knowledgable about scleroderma and you should receive very good treatment from them.

 

Please do let us know how you get on with your appointment.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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