De Sanctis Cacchione Syndrome is a rare, genetic condition that is usually diagnosed in infancy. The prognosis for infants with this condition is generally poor and the disease typically progresses, resulting in complete physical and often mental disability.

As an aggressive and severely debilitating genetic condition, De Sanctis Cacchione Syndrome is among the conditions the Social Security Administration (SSA) includes in its Compassionate Allowances (CAL) program, for expedited review and approval for benefits.

CAL Designation and Medical Documentation

While the CAL designation of the condition qualifies it for expedited review, you must still complete the full application process and thoroughly document the effects of the disorder through significant medical records.

The SSA requires diagnostic testing results and physical findings are present in the medical documentation included with your application. Specifically, that documentation should include molecular testing showing the mutation of the ERCC6 gene which is responsible for the disorder.

The documentation of physical findings may include:

• Pronounced sensitivity to and avoidance of light
• Abnormalities in skin pigmentation
• Ulcerations and scarring on the surface of the skin
• Uncontrolled motor muscle movements
• Progressive hearing loss
• Intellectual decline
• Physical body abnormalities, including a small cranium and short stature
• Shortening of the tendons
• Weakness in the limbs

Treatment protocols and their affects must also be documented in your medical records, and may include:

• Consistent and total protection from the sun and other ultraviolet light
• Dermatological evaluation and removal of skin growths, if necessary
• Neurological evaluations and treatment of any central and peripheral nervous system symptoms
• Eye exams and treatment of any vision impairment or visual complication symptoms

Once you meet the above requirements, you will also have to prove that your family qualifies for the Supplemental Security Income (SSI) program.

Applying for Benefits

Because De Sanctis Cacchione Syndrome is usually diagnosed in infancy, you will most likely be applying for benefits on behalf of a minor child. If so, you must complete an in-person interview at your local SSA office, during which an SSA representative will fill out the necessary forms for applying for SSD benefits.

You should schedule your appointment in advance and take as many of your child’s medical records with you as possible. You will also need all of your financial information, including documentation on income and assets, or other financial resources.

The review and eligibility determination process usually takes at least four months, but as a CAL condition, you should expect to receive a decision on your child’s eligibility in just a matter of weeks.

Though it is very unlikely your child’s application will be denied for medical reasons, if your child is found ineligible, you can file an appeal.

Huntington Disease is a relatively rare degenerative brain disorder that is inherited. The symptoms of the disease usually appear in adults in their 30s or 40s, and once present, progress rapidly, causes a wide range of ever-worsening symptoms and eventually leads to death. As a highly aggressive, untreatable, and terminal condition, Huntington Disease is among the conditions that are part of the Social Security Administration’s (SSA’s) Compassionate Allowances (CAL) program, a disability initiative designed to get benefits to those who need them most and in as short of a time as possible.

Huntington Diseases Symptoms and Treatments

Adult onset Huntington disease is the most common form of this genetic disorder. It affects one in every two children of a parent that carries the gene and is unfortunately an untreatable condition for which there is no known effective therapy and no cure.

Early symptoms of Huntington disease include:

• Behavioral changes
• Moodiness and irritability
• Paranoia, hallucinations and psychosis
• Restlessness, fidgeting and uncontrolled movements
• Imbalance and unsteady gait
• Abnormal facial expressions and movements
• Muscle spasms and jerking
• Rapid or exceptionally slow, uncontrolled muscle movements

As the disease progresses, dementia and other symptoms worsen, and patients slowly lose many, if not all, of their abilities, including voluntary and involuntary functions.

As there is no effective treatment for the condition, symptom reduction therapies and supportive care are the primary focus of treatment protocols undertaken with the disease.

Applying for SSD Benefits with Huntington Disease

An application for Social Security Disability (SSD) based on a diagnosis of Huntington disease is automatically entered into the CAL program and reviewed for expedited approval. Though put in the cue for quick review, your application must still meet medical evidence requirements to receive SSD.

Huntington’s disease applications are reviewed by the SSA using the criteria that appears in the Blue Book under Section 11.17. This listing states eligibility requirements for Huntington’s as presenting with:

• Disorganized motor function, in which case your application is then evaluated under Section 11.04B

OR

• Chronic brain syndrome, when requires your application to be evaluated under Section 12.02

As Huntington’s typically presents with both of these requirements, the SSA may use both Section 11.04B and Section 12.02 to evaluate the medical evidence in your application.

While most applications for disability benefits must either meet or closely match the criteria in the applicable Blue Book listings, Huntington’s is a CAL-approved disease. This means that even if your symptoms have not progressed to the point that you meet the listing in any of the applicable sections, you can still be approved for SSD benefits.

The SSA knows the progressive and aggressive nature of Huntington disease. The disease will eventually lead to the symptoms listed in the applicable sections of the Blue Book, even if it has not yet at the time of your disability application.

Though Huntington’s is a CAL-approved diagnosis, substantial medical records are still essential to being approved for disability benefits without delay.

Getting Help with Your Huntington Disease Disability Claim

Many SSD applicants mistake the listing of a condition with the SSA’s CAL program as meaning little is required to get benefits. This is not the case. You must still complete the application process, including all required forms, and you must support your claim with extensive medical records. Getting help from a disability advocate or Social Security attorney can remove some of the burden from your shoulders and can help you get the benefits you need sooner rather than later as well.

Beta thalassemia major, which is also known as Cooley’s anemia, is a rare, inherited, genetic blood disorder that appears in infancy or early childhood. Prognosis is poor, with the majority of children affected by the disorder not living past the age of 20.

Beta thalassemia major affects bone marrow and prevents the production of hemoglobin, resulting in chronic anemia and impaired oxygenation of body cells. The condition is inherently disabling and as such meets the medical requirements for children to receive Social Security Disability (SSD) benefits through the Supplemental Security Income (SSI) program; however, as SSI is a need-based program, there are additionally technical requirements for the program.

Symptoms and Treatments of Beta Thalassemia Major

Children with beta thalassemia present with a range of symptoms, which may include:

• Poor growth or a failure to thrive
• Developmental delays, including the delayed onset of puberty
• Pale skin and jaundice
• Enlarged organs, including the heart, liver and spleen
• Bone abnormalities, especially including facial structure

The inability of bone marrow to function properly means the primary treatment for beta thalassemia major is the transfusion of blood. Blood transfusions can address some of the major symptoms of the disease. They can however also contribute to disability because they are so consistently required and because of the common side effects and complications that arise from the therapy, including toxic build up of excess iron in the body.

Bone marrow transplants are sometimes required, but most other treatments used with beta thalassemia major are primarily symptomatic reduction therapies and supportive care. These may include:

• Chelation therapy, to reduce iron excesses in the body
• Surgical removal of the spleen or gallbladder, if necessary
• Daily folic acid and other dietary supplements

Applying for SSD with Beta Thalassemia Major

As beta thalassemia major most commonly strikes minors, and very early in childhood, the majority of disability applications filed with the diagnosis are submitted by parents on behalf of their children. Children, as they have no work history, are not eligible to receive Social Security Disability Insurance (SSDI) benefits. They may however qualify for Supplemental Security Income (SSI) benefits, if they meet both the technical and medical eligibility criteria.
SSI is a need-based program. This means that the financial resources, including income and assets of the child’s parents will be reviewed by the SSA to determine eligibility. Only those with fairly low income and assets are eligible for SSI, even if they meet the medical eligibility criteria.

With regard to medical eligibility, the SSA considers beta thalassemia an inherently disabling disease. Therefore, meeting the medical criteria for receiving disability benefits with this condition requires little more than a formal diagnosis and the documentation of receiving appropriate medical care on a consistent basis from a qualified health care practitioner.

Though the any application for SSD filed on beta thalassemia is virtually guaranteed to meet the medical eligibility criteria from the SSA's Blue Book, and while the SSA as part of the CAL program also approves applications with this disease for expedited processing and review, you must still complete the full application process and include substantial medical records in your claim. Any missing documentation or forms will result in delays.

It is important to note that if your child receives a bone marrow transplant, immediate approval for SSD benefits (medical eligibility) is guaranteed. Your child remains eligible for a period of one year following the transplant. Continuing eligibility is reviewed one year after the transplant to determine if your child is still eligible.

Getting Help with Your Beta Thalassemia Major Disability Claim

Although most children who are diagnosed with beta thalassemia automatically meet medical eligibility criteria for receiving disability benefits, they may or may not meet technical criteria. Understanding the application and review processes can be difficult. Getting assistance with your disability claim from a Social Security advocate or attorney can remove some of the burden from your shoulders and potentially increase your chances of receiving benefits for your minor child as well.

Bilateral optic atrophy (BOA) is a condition that impacts the optic nerve on both eyes. It interrupts the nerve impulses that communicate visual information to the brain. It can develop slowly and progress gradually, or can, in some instances occur suddenly and progress rapidly.

The impact of the condition on vision varies from case to case, ranging from very near normal in the mildest cases to blindness in the most severe.

When lymphedema is due to defects present from birth, it is considered congenital, and is a condition that can therefore affect individuals at any age. Many who have congenital defects will experience issues early in childhood, though some do not experience problems until much later in life.

In its most severe forms, congenital lymphedema that develops in children and infants is considered inherently disabling. It is additionally a condition the Social Security Administration recognizes as part of its Compassionate Allowances (CAL) program, which is designed to cut through many of the administrative delays associated with the application and review process for Social Security Disability (SSD) benefits.

Symptoms and Treatments of Congenital Lymphedema

Lymphedema is a condition in which abnormalities in the lymph system cause lymphatic malfunctions, including swelling in the lymph vessels, ducts, and glands. Lumps may develop in various locations throughout the body, though the most common include the limbs, face, and genital area.

Other common symptoms that appear with Congenital Lymphedema include:

• Dull, ache pains in the affected body area
• Swelling in the limbs, even when obvious lumps are not present
• Tightness and numbness in the skin
• Difficulty moving arms and legs
• Skin changes, including hardening or thickening of tissue
• Chronic infections of the skin
• Decreased immune function and frequent infections

Infants born with Congenital Lymphedema may additionally have other birth defects, including the incomplete formation of other body organs. Congenital heart defects are commonly present in the more severe cases as well.

There is, unfortunately, no cure for Congenital Lymphedema. Treatments for the condition instead focus on reducing and managing symptoms, and may include:

• Palliative surgeries
• The use of compression bandages
• The manual drainage of lymph fluid
• Lymphatic massage therapy

Applying for SSD with Congenital Lymphedema

When applying for SSD benefits for your child with Congenital Lymphedema, it is important to understand that children approved for disability benefits are paid through Supplemental Security Income (SSI) rather than Social Security Disability Insurance (SSDI). SSI is a need-based program, which means there are financial limitations among the technical criteria for eligibility. As such, the SSA will evaluate your finances when determining if your child qualified to receive disability benefits through SSI.

Additionally, while Congenital Lymphedema is considered a CAL approved condition, medical evidence is still required for proving disability. In determining if your child’s application meets the medical requirements for SSI, the SSA will compare the evidence and records in your application and your child’s medical documentation to listing in the Blue Book. The Blue Book is the manual of disabling conditions and the evidentiary requirements for substantiating disability claims.

There is no dedicated listing for lymphedema for adults or for children. There are however guidelines for how the SSA evaluates child lymphedema claims. These guidelines appear in Section 104.00 F, which although it is entitled “Evaluating Other Cardiovascular Impairments”, actually contains the details of which listings are used for comparing lymphedema documentation to other listed conditions.

Comparable listings that may be reviewed by the SSA in evaluating a Congenital Lymphedema claim include:

• Section 4.11, Part A of the Blue Book – Adult listing for chronic venous insufficiency
• Section 101.02A, Part B – Child listing for major dysfunction of a joint, due to any cause
• Section 101.03, Part B – Child listing for reconstructive surgery or surgical arthrodesis of a major weight-bearing joint

Getting Assistance with Your Congenital Lymphedema Disability Claim

Although it is uncommon for CAL condition disability applications to not meet medical eligibility criteria for SSD benefits, it does occasionally happen. Usually, such denials are due to lacking or missing information in the application documents or medical records submitted. Getting help from a disability advocate or attorney with your application for Congenital Lymphedema may prevent unnecessary delays in the processing of your claim and reduce the likelihood of denial as well.

T-Cell Lymphoblastic Lymphoma is a form of non-Hodgkin lymphoma, which presents similarly to leukemia. It is a condition that is recognized by the Social Security Administration (SSA) as inherently disabling, particularly when it develops in children, and is among the diseases approved for quick review for Social Security Disability (SSD) benefits as part of the Compassionate Allowances (CAL) program.

Child T-Cell Lymphoblastic Lymphoma Symptoms and Treatments

While T-Cell Lymphoblastic Lymphoma has much in common with leukemia, including its affects on the central nervous system, bone marrow and spleen, there are also distinct differences between the two, which is why this form of cancer is classified separately. The major distinction in symptoms is the development of tumors in various regions of the body, including the:

• Abdomen
• Lymph glands
• Tonsils
• Thyroid
• Bones
• Skin tissues

T-Cell Lymphoblastic Lymphoma typically develops in early childhood. It is rarely diagnosed in its early stages and often progresses quite quickly, advancing to stages III and IV before diagnosis. The earlier the condition is diagnoses, the more promising the prognosis. Treatments used with T-Cell Lymphoblastic Lymphoma include:

• Chemotherapy
• Radiation treatments
• Radioimmunotherapy
• Biological cancer treatments
• Surgical resection of tumors, when possible

The stage of the cancer and the child’s age and overall health determine the course of treatment. Therapies are often used in conjunction or consecutively.

Applying for SSD with Child T-Cell Lymphoblastic Lymphoma

As Child T-Cell Lymphoblastic Lymphoma is a CAL approved condition, denial of benefits based on medical criteria is rare; however, you must still complete the application process and support your claim with substantial medical documentation to prove disability. The CAL designation only ensures the application will be reviewed more quickly and with minimal delays. It does not guarantee benefits.

In reviewing the medical information in your child’s application, the SSA will consult the Blue Book listing for T-Cell Lymphoblastic Lymphoma, which appears under Section 113.06 under the listing for acute leukemia. Under this listing, your child’s condition is considered disabling for a minimum of 24 months from the date of diagnosis or relapse, regardless of how he or she responds to treatment.

If approved for benefits, your child’s eligibility will be periodically reviewed to ensure he or she still meets the criteria for receiving benefits under disability program rules. This includes the review of current medical condition as well as analysis under technical eligibility criteria.

It is crucial to note that children’s disability benefits are paid through the Social Security Administration’s (SSA’s) Supplemental Security Income (SSI) program, which is a need-based program designed to give support to those with minimal financial resources. Children must have very limited income and assets available in order to receive benefits through SSI.

The SSA will review your child’s financial resources and your own income and assets to determine technical eligibility through SSI. Even if your child meets medical eligibility criteria, he or she may or may not be approved for benefits, dependent upon the outcome of the analysis of technical/financial eligibility.

Getting Help with Your Child T-Cell Lymphoblastic Lymphoma Disability Claim

Though T-Cell Lymphoblastic Lymphoma is considered an inherently disabling disease and is also approved for the expedited review and processing of claims as part of the SSA’s CAL program, disability benefits are not guaranteed. You must still complete the full application process and support your claim with sufficient medical and other documentation to prove disability. You may wish to consider seeking assistance from a disability advocate or attorney in filing your application and collecting the required records for supporting the claim.

Caudal regression syndrome is a congenital disorder in which the lower spine does not develop properly in infants in the womb. It can vary greatly in severity, ranging from mild to extremely severe. Children affected by more mild forms of the disorder can often live fairly normal lives, while those afflicted with the more severe forms, types III and IV, suffer major birth defects and complications.

A rare genetic disorder that affects brain development of male infants even prior to birth, Allan-Herndon-Dudley Syndrome (AHDS) is an inherently disabling condition that causes lifelong mental and physical impairment for those affected by it.

Allan-Herndon-Dudley Syndrome - Symptoms and Treatments

AHDS and the symptoms of the condition may be moderate to severe. Infants born with the condition often appear normal, but typically show developmental delays that may worsen with age. Early symptoms usually include:

Non-Hodgkin Lymphoma is a form of cancer that affects the lymph system and which can occur in adults or children. Adult Non-Hodgkin Lymphoma causes a range of symptoms, the combination of which can be debilitating. The treatments required for the condition make it especially difficult to maintain gainful employment when suffering from this disease. The Social Security Administration (SSA) recognizes Adult Non-Hodgkin Lymphoma as a potentially disabling condition that may qualify you for Social Security Disability (SSD) benefits.

Alveolar soft part (ASP) sarcoma is a rare cancer that most often affects children, teenagers and young adults. Though the disease usually progresses slowly, it is often not diagnosed until it has had the chance to spread, which in turn often leaves patients with a poor prognosis.

The condition is known to be severely disabling and is therefore automatically presumed to qualify Social Security Disability (SSD) benefits. However, as children receive benefits through Supplemental Security Income (SSI), which is a need-based program, there are financial eligibility criteria, which must also be met in order for your child’s application for disability benefits to be approved.

Symptoms and Treatments of Alveolar Soft Part Sarcoma

Early signs and symptoms of ASP sarcoma include:

• Diffuse pain or soreness
• The development of painful lumps or swelling in the soft tissues, often beginning in the thighs
• Trouble using legs and/or feet, including limping or loss of coordination

Because ASP sarcoma is often not diagnosed until its latter stages, cancer usually metastasizes, with tumors forming in any area of the body’s soft tissues and sometimes inside of bones. The disease may onset anywhere from infancy to early adulthood and treatments may include:

• Radiation therapy
• Chemotherapy
• Surgical removal of tumors

Patients respond differently to treatments, and while ASP sarcoma often goes into remission, the disease almost always recurs and is also usually terminal.

Applying for SSD with Alveolar Soft Part Sarcoma

Alveolar soft part sarcoma is among the conditions approved by the Social Security Administration (SSA) for expedited processing as part of the Compassionate Allowances (CAL) program. CAL is designed to significantly shorten the wait for a disability determination for applicants with conditions that are known to be inherently and severely disabling.

While part of the CAL program, ASP sarcoma applications must still contain extensive documentation, including all the appropriate forms and pertinent medical records. Approval for disability benefits is not a guarantee, even with all these considerations. This is because the SSA must still review the application to ensure it meets both the medical and technical requirements for disability eligibility.

The technical requirements are dependent on the age of the applicant. If the application is filed on behalf of a minor child, then SSI requirements apply. For applications filed by individuals over the age of 18, SSDI technical criteria apply instead.

SSI is a need-based program. The financial resources and income of the child and his or her parents are considered when determining eligibility. For SSDI however, the applicant’s eligibility is reviewed for sufficient work credits. Adult disabled children whose disability occurred prior to the age of 22 may satisfy work credit requirements for SSDI benefits by qualifying under the work history of a parent.

Medical eligibility is established by reviewing the application in comparison to a listing in the SSA’s Blue Book. The listings that apply to applications for alveolar soft part sarcoma are as follows:

• Section 113.03 in Part B – for children
• Section 13.04 in Part A – for adults

To meet Section 113.03, a child’s application must simply document:

• The confirmed diagnosis of ASP sarcoma

OR

• The recurrence of the condition after a period of remission

For meeting the listing under Section 13.04, adult applicants must show:

• Diagnosis of ASP sarcoma

AND

• The presence of metastatic tumors

OR

• Recurrence of the disease after a period of remission or following initial treatment

OR

• Persistence of the cancer even after receiving treatment

Getting Assistance with Your Alveolar Soft Part Sarcoma Disability Claim

Though claims filed on alveolar soft part sarcoma are typically approved for disability benefits, many still find it beneficial to consult a disability advocate or attorney when filing their application. The application and review processes can be confusing and having the help can make the process run more smoothly and can also ensure there are no unnecessary delays in the processing of your claim as well.