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.
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The first step in attaining disability benefits for HHT is to apply for benefits. You can apply online or call your local SSA office to set up an appointment to file.
Social Security generally offers two types of benefits to people with disabilities:
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 10 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 2025, SSI is $967 a month for an individual and $1,450.00 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 benefits you are eligible to apply for. After your application, you still have to be found disabled to receive either benefit.
Hereditary Hemorrhagic Telangiectasia (HHT or Osler Weber Rendu Syndrome) is a rare genetic disorder that affects blood vessels.
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."
Scientists have identified four genes that are affected in HHT patients: ENG, AVCRL1, SMAD4, and GDF. Only one abnormal gene with a mutation is needed to cause HHT (CDC).
HHT affects all racial and ethnic groups, but studies have revealed possible mutations with results demonstrating that those who identify as Asian may have higher rates of pulmonary AVMs. In contrast, patients identifying as Hispanic or Latino may have more cerebral AVMs (via NIH).
In Hereditary Hemorrhagic Telangiectasia, blood vessels that join arteries to veins (capillaries) are not correctly formed. Capillaries are tiny blood vessels that bridge arteries and veins, transporting nutrients to organs and removing waste products.
Diagnosis of HHT
The Curacao Diagnostic Criteria is a tool for determining if a patient has HHT. A healthcare provider will look for three of the four symptoms for a definitive diagnosis of HHT: frequent nosebleeds (most common symptom), multiple telangiectases, arteriovenous malformations, or a family history of HHT.
Genetic testing can also be used to confirm a diagnosis for HHT patients (Cure HHT), but negative genetic testing does not rule out HHT entirely.
HHT Symptoms
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.
Telangiectasia
Telangiectasia are prominent clusters of small, damaged blood vessels visible in the skin (NIH) as red, blue, or purple lines. Spider veins rarely cause health issues for most patients, but they can cause pain and itching (Healthline).
Sclerotherapy or laser treatment are viable treatment options for spider veins.
Arteriovenous Malformations
Arteriovenous Malformations are tangles of blood vessels that create irregular connections between veins and arteries. AVMS are common to the central nervous system but can form anywhere.
If a tangle of blood vessels bursts in the brain, it can result in severe bleeding (hemorrhage) (Mayo Clinic).
Spontaneous and unprovoked recurrent nosebleeds, shortness of breath, anemia, fatigue, blood in stool, and migraine headaches are all symptoms (Via the Mayo Clinic).
Treatment for HHT
There is no cure for HHT (Osler Weber Rendu Syndrome), but laser therapy, embolization, or hormone therapy are treatment options.
In addition, the type of physician required will depend on the location of the symptom. ENTs treat nosebleeds, Interventional radiologists for AVMs, pulmonologists for lung AVMs, hematologists for blood disorders, genetic counselors, and neurologists for brain AVMS, as examples (UM).
In those with minor superficial blood loss from HHT, iron supplementation 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 required. AVM treatments depend on size and location on the body.
For brain arteriovenous malformations, stereotactic radiosurgery is utilized. Pulmonary AVMs are primarily treated with transcatheter embolization (Cure HHT).
Affected organs with chronic bleeding can result in serious complications. A multidisciplinary HHT team can provide comprehensive care to prevent complications.
Disability Benefits 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 controllable symptoms, while others have symptoms that hinder every aspect of their daily life. As discussed above, if blood is routed to tiny blood vessels at high pressure, bleeding will occur. This bleeding can occur anywhere in the body.
If this bleeding occurs in the brain, lungs, or heart, it may result in blood clots, a stroke, or heart failure. 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 blood flowing to new blood vessels that rupture, causing bleeding. In addition, an unfortunate side effect of aging is that impairments tend to become more severe, and additional illnesses tend to arise.
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)
Limitation of activities of daily living (see 7.00G5).
Limitation in maintaining social functioning (see 7.00G6).
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 who 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/carrying) 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.
SSA should use the symptoms from all your impairments to determine if you are disabled.
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.
