Disability Benefits for Hereditary Hemorrhagic Telangiectasia

Disability Benefits for Hereditary hemorrhagic telangiectasia
By Kimberly BishopMarch 7, 2024

This post discusses Social Security Disability benefits for Hereditary Hemorrhagic Telangiectasia. If you or someone you care for is unable to work due to HHT, read on. 

The Bishop Law Firm has represented disability clients in Raleigh and surrounding areas of North Carolina since 2013. Read about The Bishop Law Firm.

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Social Security Disability Benefits

The first step in attaining disability benefits for HHT is to apply for benefits. Before applying, you need to know what type of benefits SSA offers. Social Security generally offers two types of benefits to the disabled:

Social Security Disability Insurance (SSDI)

SSDI (Social Security Disability Insurance) is based on the credits from the work you have done in your life. You must be found disabled before your date last insured (DLI) to be found eligible for SSDI. Your DLI is calculated by counting your “quarters of coverage” from your earnings record. You must have 20 “quarters of coverage” of the last 40 quarters. Simply put, you must have worked 5 years of the last ten years (in general).

Supplemental Security Income (SSI)

SSI (Supplemental Security Income) is a need-based program and you must meet income/asset standards in addition to being found disabled under the five steps above. In 2024, SSI is $943 a month for an individual and $1,415.00 for an eligible couple. SSI will be reduced by 1/3 if you are receiving financial help from others. In NC, SSI recipients are also entitled to Medicaid.

When you apply for benefits, Social Security should let you know what benefit you are eligible to apply for. After your application, you still have to be found disabled in order to receive either benefit.

Read North Carolina Social Security Disability Lawyer for more on the process.

What is HHT?

Hereditary Hemorrhagic Telangiectasia (HHT or Osler Weber Rendu Syndrome) is a genetic disorder that affects blood vessels. Blood vessels that join arteries to veins (capillaries) are not correctly formed.

HHT is an inherited disorder. According to the Mayo Clinic, "HHT is an autosomal dominant disorder, which means that if one of your parents has HHT, you have a 50 percent chance of inheriting it. If you have HHT, each of your children has a 50 percent chance of inheriting it from you."

Without functioning capillaries, blood moves with high pressure from the arteries to the thinner, less elastic veins (via NIH) . This results in telangiectasia (spider veins or abnormal blood vessels) or arteriovenous malformations (AVMs are common to central nervous system but can form anywhere).

Spontaneous and unprovoked nosebleeds, shortness of breath, anemia, fatigue, blood in stool and migraine headaches are all symptoms (Via the Mayo Clinic). There is not a cure for HHT, but laser therapy, embolization or hormone therapy are treatment options.

In those with minor superficial blood loss, iron supplements can help. But in others, IV Iron or blood transfusions may also be required.

The treatment needed will depend on the severity of symptoms. For nose bleeds, the Epistaxis Severity Score (ESS) can help determine when and what treatment is needed. AVM treatments depend on size and location on the body.

Unfortunately, HHT can affect the inside on one's body as well (pulmonary AVM, brain VM, liver VM, spinal cord AVM, GI tract AVM) (Via Cure HHT). Affected organs with persistent bleeding can result in life threatening complications.

Disability for Hereditary Hemorrhagic Telangiectasia

No matter their diagnosis, all claimants for SSA Disability must prove that their impairment prevents them from working. The real question to be answered is how severe are your HHT symptoms?

Some individuals with HHT have symptoms that are controllable while others have symptoms that hinder every aspect of their daily life.  As discussed above, if blood is routed to incapable veins at high pressure, bleeding will occur. This bleeding can occur anywhere in the body.

If this bleeding occurs in the brain or lungs, it may result in a stroke. In addition, frequent blood loss can result in anemia which may require blood transfusions or iron infusions.

Treatment options work for some, but in other cases cauterizing the bleeding veins only results in the blood flowing to other veins for release.  In addition, an unfortunate side effect of aging is that impairments tend to become more severe and additional illnesses tend to arise.

Read Social Security Disability Conditions

The Social Security Administration can evaluate your claim for disability benefits for Hereditary Hemorrhagic Telangiectasia in different ways.

Until 2015, there was a specific listing for HHT, but now 7.00 Hematological Disorders is all we have. Listing 7.18 discusses repeated complications of hematological disorders.

7.18 Repeated complications of hematological disorders (see 7.00G2) including those complications listed in 7.05, 7.08, and 7.10 but without the requisite findings for those listings, or other complications (for example, anemia, osteonecrosis, retinopathy, skin ulcers, silent central nervous system infarction, cognitive or other mental limitation, or limitation of joint movement), resulting in significant, documented symptoms or signs (for example, pain, severe fatigue, malaise, fever, night sweats, headaches, joint or muscle swelling, or shortness of breath), and one of the following at the marked level (see 7.00G4)

  1. Limitation of activities of daily living (see 7.00G5).
  2. Limitation in maintaining social functioning (see 7.00G6).
  3. Limitation in completing tasks in a timely manner due to deficiencies in concentration, persistence, or pace (see 7.00G7).

This listing requires complications and MARKED limitations. SSA defines "marked" as "a limitation that is “more than moderate” but “less than extreme.” It is the equivalent of the functioning we would expect to find on standardized testing with scores that are at least two, but less than three, standard deviations below the mean (via SSA).

In this author's opinion, to meet this listing, you would need to have several interferences to your daily functioning from your HHT despite following all medical advice and work has stopped being an option a while ago. As discussed elsewhere on this site, the SSA Listings are in most cases difficult to meet.

Another possibility of allowance is the Medical Vocational Guidelines (the Grids). The grids help those that are age 50 and older but offer no help for those with non-exertional impairments or those under 50. If your HHT has reduced your physical endurance (walking, sitting, standing, lifting/carry) to the sedentary level, you may be found disabled.

The last way a person may get benefits for HHT is by the combination of their impairments. Fatigue from anemia requiring blood transfusions, frequent nose bleeds, and shortness of breath could eliminate your ability to work. In addition, as mentioned above, with age, we often develop more impairments. The symptoms from all your impairments should be used by SSA to determine if you are disabled.

Do you need a Social Security Disability Attorney?

If you are unable to work because of your HHT, applying for Disability Benefits for Hereditary Hemorrhagic Telangiectasia may be your next move.

A Social Security Disability Lawyer can help your disability case by knowing what evidence the agency needs to approve your case, making the appropriate arguments and timely appealing denials in the appeals process.

The Bishop Law Firm represents Social Security Disability clients in RaleighDurhamFayettevilleCary, Rocky MountWilsonSmithfieldLouisburgChapel HillRoanoke Rapids , Winston SalemGarner, GreensboroGreenville and surrounding areas in North Carolina.

Give us a call today for a free review, (919) 615-3095 or start online now.

Also, for further information on HHT, you should visit Cure HHT.

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