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Biomarker for Diffuse Scleroderma skin has been discovered!


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SSA Compassionate Allowances


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#1 Kathy D

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Posted 17 October 2009 - 06:35 AM

I ran across a post on the internet that mentioned Scleroderma as one of the rare diseases covered, but cannot verify it.

Does anyone have more information about this?

Have a good weekend.

Kathy
Diffuse Scleroderma Diagnosed March 2009

#2 Jeannie McClelland

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Posted 17 October 2009 - 07:16 AM

Hi Karen,

It's not in the original List of Compassionate Allowance Conditions: http://www.socialsec.../conditions.htm however, you might want to check out this section: http://www.ssa.gov/d...-Skin-Adult.htm

In part it says:



A. What skin disorders do we evaluate with these listings?

We use these listings to evaluate skin disorders that may result from hereditary, congenital, or acquired pathological processes. The kinds of impairments covered by these listings are: Ichthyosis, bullous diseases, chronic infections of the skin or mucous membranes, dermatitis, hidradenitis suppurativa, genetic photosensitivity disorders, and burns.

B. What documentation do we need?

When we evaluate the existence and severity of your skin disorder, we generally need information about the onset, duration, frequency of flare-ups, and prognosis of your skin disorder; the location, size, and appearance of lesions; and, when applicable, history of exposure to toxins, allergens, or irritants, familial incidence, seasonal variation, stress factors, and your ability to function outside of a highly protective environment. To confirm the diagnosis, we may need laboratory findings (for example, results of a biopsy obtained independently of Social Security disability evaluation or blood tests) or evidence from other medically acceptable methods consistent with the prevailing state of medical knowledge and clinical practice.

C. How do we assess the severity of your skin disorder(s)?

We generally base our assessment of severity on the extent of your skin lesions, the frequency of flare-ups of your skin lesions, how your symptoms (including pain) limit you, the extent of your treatment, and how your treatment affects you.

1. Extensive skin lesions.

Extensive skin lesions are those that involve multiple body sites or critical body areas, and result in a very serious limitation. Examples of extensive skin lesions that result in a very serious limitation include but are not limited to:

a. Skin lesions that interfere with the motion of your joints and that very seriously limit your use of more than one extremity; that is, two upper extremities, two lower extremities, or one upper and one lower extremity.

b. Skin lesions on the palms of both hands that very seriously limit your ability to do fine and gross motor movements.

c. Skin lesions on the soles of both feet, the perineum, or both inguinal areas that very seriously limit your ability to ambulate.

2. Frequency of flare-ups.

If you have skin lesions, but they do not meet the requirements of any of the listings in this body system, you may still have an impairment that prevents you from doing any gainful activity when we consider your condition over time, especially if your flare-ups result in extensive skin lesions, as defined in C1 of this section. Therefore, if you have frequent flare-ups, we may find that your impairment(s) is medically equal to one of these listings even though you have some periods during which your condition is in remission. We will consider how frequent and serious your flare-ups are, how quickly they resolve, and how you function between flare-ups to determine whether you have been unable to do any gainful activity for a continuous period of at least 12 months or can be expected to be unable to do any gainful activity for a continuous period of at least 12 months. We will also consider the frequency of your flare-ups when we determine whether you have a severe impairment and when we need to assess your residual functional capacity.

3. Symptoms (including pain).

Symptoms (including pain) may be important factors contributing to the severity of your skin disorder(s). We assess the impact of symptoms as explained in §§ 404.1528, 404.1529, 416.928, and 416.929 of this chapter.

4. Treatment.

We assess the effects of medication, therapy, surgery, and any other form of treatment you receive when we determine the severity and duration of your impairment(s). Skin disorders frequently respond to treatment; however, response to treatment can vary widely, with some impairments becoming resistant to treatment. Some treatments can have side effects that can in themselves result in limitations.

a. We assess the effects of continuing treatment as prescribed by determining if there is improvement in the symptoms, signs, and laboratory findings of your disorder, and if you experience side effects that result in functional limitations. To assess the effects of your treatment, we may need information about:

i. The treatment you have been prescribed (for example, the type, dosage, method, and frequency of administration of medication or therapy);

ii. Your response to the treatment;

iii. Any adverse effects of the treatment; and

iv. The expected duration of the treatment.

b. Because treatment itself or the effects of treatment may be temporary, in most cases sufficient time must elapse to allow us to evaluate the impact and expected duration of treatment and its side effects. Except under 8.07 and 8.08, you must follow continuing treatment as prescribed for at least 3 months before your impairment can be determined to meet the requirements of a skin disorder listing. (See 8.00H if you are not undergoing treatment or did not have treatment for 3 months.) We consider your specific response to treatment when we evaluate the overall severity of your impairment.

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D. How do we assess impairments that may affect the skin and other body systems?

When your impairment affects your skin and has effects in other body systems, we first evaluate the predominant feature of your impairment under the appropriate body system. Examples include, but are not limited to the following.

1. Tuberous sclerosis primarily affects the brain. The predominant features are seizures, which we evaluate under the neurological listings in 11.00, and developmental delays or other mental disorders, which we evaluate under the mental disorders listings in 12.00.

2. Malignant tumors of the skin (for example, malignant melanomas) are cancers, or neoplastic diseases, which we evaluate under the listings in 13.00.

3. Autoimmune disorders and other immune system disorders (for example, systemic lupus erythematosus (SLE), scleroderma, human immunodeficiency virus (HIV) infection, and Sjögren's syndrome) often involve more than one body system. We first evaluate these disorders under the immune system disorders listings in 14.00. We evaluate SLE under 14.02, scleroderma under 14.04, HIV infection under 14.08, and Sjögren's syndrome under 14.10.

4. Disfigurement or deformity resulting from skin lesions may result in loss of sight, hearing, speech, and the ability to chew (mastication). We evaluate these impairments and their effects under the special senses and speech listings in 2.00 and the digestive system listings in 5.00. Facial disfigurement or other physical deformities may also have effects we evaluate under the mental disorders listings in 12.00, such as when they affect mood or social functioning.


Jeannie McClelland
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International Scleroderma Network

#3 Peggy

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Posted 18 October 2009 - 07:54 AM

I have a posting from November of 2008 wherein Social Security listed Scleroderma as a disease to be considered as a compassionate allowance and therefore should be fast tracked when considering the application. This happened the month that I was making my application so I faxed this to my social security rep that was helping me with my application and did my telephone interview. He included this with my application and sent it to St. Paul and requested it be fast tracked and it was. I was approved in a month and received my check another month later.

I hope this helps.

Hugs,
Peggy

#4 Kathy D

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Posted 18 October 2009 - 09:49 AM

Hi Peggy,

I just searched and searched for your Nov 2008 post and could not locate it. Could you give me more info? Do you remember the date you posted? Or, was it in reply to anothers post or did you post it?

Thanks!!

Kathy
Diffuse Scleroderma Diagnosed March 2009