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In Desperate need of help!


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#1 Shelbi25

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Posted 25 July 2013 - 11:12 AM

Hello,

 

My name is Shelbi, my step dad was diagnosed with Scleroderma/Morphea about a year ago, he started showing symptoms of the disease about a year prior to his diagnosis. He currently lives in Austin Texas with my mother, however due to the severity of his disease he had to quit his job. They are currently trying to get him on disability and are having to live with me since they were unable to pay their bills. I live near Dallas Texas and am trying to find the best Scleroderma specialist possible. He was going to a doctor but she was one of the least caring doctors I have ever met. If anyone could PLEASE give me any information you may have to help him find a doctor!! WE ARE DESPERATE!! He is in SO much pain, I hate seeing him just lay there suffering.. It is incredibly heartbreaking.

 

Thank you so much for your time.



#2 Joelf

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Posted 25 July 2013 - 12:55 PM

Hi Shelbi,

 

Welcome to these forums!

 

I'm sorry to hear that your stepfather has been diagnosed with Morphea Scleroderma and has been suffering so much because of it. Morphea is entirely different to systemic Scleroderma and although it is unusual to have both, it's still quite possible (as Amanda can testify.)

 

I've included links to our medical pages on Morphea and also Scleroderma experts which I hope you'll find helpful and informative. I've also included a link to our page on Morphea Scleroderma Treatments including an article on UVA1 phototherapy which is now the recommended first line treatment for Morphea.

 

I do hope you will be able to get your stepfather a referral to a Scleroderma specialist.

 

Kind regards,


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#3 miocean

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Posted 25 July 2013 - 05:37 PM

Dear Shelbi,

 

I am so sorry your step father is suffering and know how hard it is for your family as well. There is a scleroderma center in Dallas. You can find it on the link Jo sent on scleroderma specialists. I do not know where your father went before and the doctor was "uncaring" but I can give you this advice:

 

The doctor's personality is not an indicator of expertise.

 

The best combination of a doctor is one who is excellent and outstanding in the field, personable, warm, interested in you as a whole person and not just their field of expertise, can take the time to call you personally and responds to your calls immediately, but to find a doctor with all these traits is impossible.  And as most of us can attest, you are living in a fantasy land if you think you can find one and treasure one if you do. Speaking from experience with 9 years of dealing with diffuse scleroderma and multiple organ damage that involves a ton of specialists including a scleroderma specialist, sometimes you have to overlook the doctor's personality and realize that knowledge and proper treatment is more important than warm fuzzies. 

 

Scleroderma is one of the qualifying diseases for SS disability. Quite often the process for approval is long, with denials and appeals. You can hire a lawyer to help expedite the process and a portion of the payment will go to them but there is usually no payment up front. It does take a while to get approved and then several months before benefits begin. Most people find they are turned down on the first try and some hire a lawyer right from the start. Since my kidneys failed almost immediately I qualified without appeals.

 

It can take a while to get this all sorted out, between getting in with the specialist for an appointment, getting the right treatment, going through all the tests, and going through the SSD process so don't expect results overnight. You father is fortunate to have such a caring a supportive family. This forum is a wonderful place for support and answers and we are here for you. 

 

miocean


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#4 Shelley Ensz

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Posted 25 July 2013 - 05:52 PM

Hi Shelbi,

 

Welcome to Sclero Forums!  I'm sorry your stepfather has morphea, and send my best wishes to you and your family. 

 

Please study the links that Jo sent you. UVA1 phototherapy is now recommended as the first line treatment, showing improvement in over 80% of morphea patients.  It is unusual for morphea to cause disability; that is not to say that it cannot happen, of course.  The Social Security guidelines that Miocean referred to are in regard to systemic forms of scleroderma, which does not include morphea. See Types of Scleroderma for more info, which includes a video overview.

 

There is also a major scleroderma center in Houston, and I would highly recommend that you consider them as well.  See our section on ISN Guide to Scleroderma Experts.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
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#5 msjess

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Posted 29 July 2013 - 12:24 PM

Just wanted to add that you've come to a great place for information. I hope you and your dad get the help you need in dealing with this illness. Make sure you and your mom take time to take care of yourselves as well... being a caretaker can take quite a toll on you.

 

Good luck.



#6 Amanda Thorpe

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Posted 29 July 2013 - 01:54 PM

Hello  Shelbi

 

Welcome to the forums, it is unusual but not impossible for morphea to debilitate and cause pain, are you sure of the diagnosis? Visiting the scleroderma centre in Houston would be a way to have the diagnosis confirmed something crucial if disability is being pursued.

 

By the way taking your parents in and helping source information is a good thing, a really good thing, well done you.

 

Take care.


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#7 Sweet

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Posted 01 August 2013 - 11:34 AM

Hi Shelbi,

 

Welcome to the forums!

 

I'm sorry to hear that your stepfather has been diagnosed with Morphea Scleroderma. It can be frightening, and complicated. I see that Shelley has given you the link to the Scleroderma Experts. I do hope he is able to find a compatible provider. Hang tight!


Warm and gentle hugs,

Pamela
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