DiGeorge Syndrome Can Support a Disability Claim

Yes, DiGeorge syndrome can be the medical basis for a Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI) claim. The Social Security Administration does not maintain a straightforward list of conditions that automatically may have access to; instead, it evaluates whether your specific symptoms and limitations prevent you from working. DiGeorge syndrome presents differently in each person—some experience mild immune deficiency, others have severe cardiac or developmental complications—so the strength of your claim depends on the medical evidence you submit, not the diagnosis alone.

Social Security uses two pathways to decide claims involving DiGeorge syndrome. The first is the Listing of Impairments, a set of condition-specific criteria that, if met, result in approval without further evaluation. The second is residual functional capacity (RFC), which measures what you can still do despite your condition. Most DiGeorge claims succeed through RFC rather than the listings, because the condition's effects vary widely.

Key Takeaways

  • DiGeorge syndrome does not automatically may have access to you for disability; Social Security evaluates your specific symptoms and work limitations.
  • The most relevant listings for DiGeorge claims are immune system disorders (Section 6.00) and congenital heart disease (Section 4.00), depending on your primary complications.
  • Medical records showing recurrent infections, cardiac dysfunction, developmental delays, or need for ongoing immunosuppressive treatment strengthen your claim significantly.
  • You must document how your condition prevents you from working any job, not just your current job, to win on RFC grounds.
  • An RFC assessment from your treating physician carries more weight than a Social Security consultative exam.

How Social Security Evaluates DiGeorge Syndrome

Social Security does not ask whether you have DiGeorge syndrome. It asks whether the effects of DiGeorge syndrome prevent you from doing any work. This distinction matters because two people with the same diagnosis can have very different outcomes.

The agency looks at your medical records to understand what your condition actually does to your body and mind. For DiGeorge syndrome, this typically includes immune function tests (T-cell counts, immunoglobulin levels), cardiac imaging and function reports, developmental or neuropsychological testing if applicable, and documentation of infections, hospitalizations, or treatments. If you have had a thymus transplant, cardiac surgery, or immunoglobulin replacement therapy, those records are central to your claim.

Social Security also considers your age, education, and work history. A 28-year-old with DiGeorge syndrome who worked as a software developer faces a different evaluation than a 52-year-old with the same diagnosis who worked in construction. The agency must decide whether your condition prevents you from returning to past work and whether you could do any other work that exists in significant numbers in the national economy.

Listings That May explore to DiGeorge Syndrome

DiGeorge syndrome can trigger approval under two sections of the Listing of Impairments, depending on which system is most affected.

Section 6.00 (Immune System Disorders) covers recurrent infections caused by immunodeficiency. To meet this listing, you must show a history of bacterial, viral, fungal, or parasitic infections requiring hospitalization or intravenous treatment, occurring at least three times in a 12-month period. If you are on immunoglobulin replacement therapy or have a documented T-cell count below 200 cells/mm³, you may meet the listing without proving three separate infections. Medical records from your immunologist or infectious disease specialist are essential here.

Section 4.00 (Cardiovascular System) applies if DiGeorge syndrome has caused congenital heart disease. The relevant criteria depend on the specific defect—tetralogy of Fallot, truncus arteriosus, interrupted aortic arch, or other anomalies. You would need cardiac imaging (echocardiogram, CT, or cardiac catheterization) showing the defect, plus evidence of functional limitation such as ejection fraction below 30%, recurrent syncope, or need for ongoing surgical intervention. Cardiology records are critical.

Meeting a listing does not require hospitalization or complete inability to function. It requires medical evidence that your condition meets the specific criteria. Many people with DiGeorge syndrome do not meet a listing but still win on RFC grounds.

Building Your Claim With Medical Evidence

Your treating physicians—immunologist, cardiologist, geneticist, or developmental pediatrician—are your strongest witnesses. Social Security values their observations because they know your condition over time, not from a single exam. Ask each doctor to write a statement addressing how DiGeorge syndrome affects your ability to work. Specifically, ask them to describe limitations in standing, sitting, concentration, infection risk, medication side effects, need for frequent medical appointments, and any restrictions on physical activity or exposure to crowds.

Gather all relevant test results: immunoglobulin levels, T-cell counts, flow cytometry, cardiac imaging reports, echocardiogram results, and any genetic testing confirming DiGeorge syndrome (22q11 deletion). Include records of infections, hospitalizations, and treatments. If you have had surgery—thymus transplant, cardiac repair, or other procedures—include operative reports and follow-up notes. Document any medications you take and their side effects, especially immunosuppressants or cardiac drugs that may cause fatigue, tremor, or cognitive effects.

If you have not seen a specialist recently, schedule an appointment before filing or appealing. Social Security is more likely to credit current medical evidence than records from years ago. If you cannot afford a specialist, ask your primary care doctor to document your condition and limitations; it is less ideal than specialist records but better than no recent evidence.

Residual Functional Capacity and Work Limitations

If your case does not meet a listing, Social Security will assess your residual functional capacity—what you can still do despite DiGeorge syndrome. This is where most claims are decided. The agency will ask: Can you sit for eight hours? Stand for six? Concentrate on tasks? Handle stress? Work around others without risk of infection? Travel to work reliably?

DiGeorge syndrome can limit work capacity in several ways. Recurrent infections may mean you cannot work in environments with high infection risk (schools, hospitals, crowded offices). Cardiac limitations may restrict standing, walking, or climbing. Developmental or learning delays may limit the complexity of tasks you can perform. Anxiety or attention problems, common in DiGeorge syndrome, may affect your ability to follow instructions or work independently. Frequent medical appointments may make full-time work impossible.

Your doctor's RFC form is more persuasive than Social Security's own consultative exam. If you receive a consultative exam—a one-time evaluation by a doctor Social Security hires—that exam carries less weight if it contradicts your treating physician's assessment, especially if the examiner has no prior knowledge of your condition. Bring your medical records to any consultative exam and correct any misstatements the examiner makes.

What Happens During the Decision Process

After you submit your claim, a disability examiner at your state's Disability information Services office will review your medical records and decide whether you meet a listing or can work despite your condition. This usually takes 30 to 90 days. If the examiner denies your claim, you have the right to appeal.

The first appeal is called reconsideration. A different examiner reviews your case and any new evidence you submit. This stage takes another 30 to 90 days. If reconsideration is denied, you can request a hearing before an Administrative Law Judge (ALJ). This hearing is your strongest opportunity to present your case, especially if you can have a lawyer represent you. The ALJ will ask you questions about your condition and limitations, and your doctor may testify.

At every stage, submit new medical evidence if you have it. If your condition has worsened, if you have had new infections or cardiac events, or if you have new test results, include them. Do not assume the examiner has all your records; medical offices sometimes fail to send them. Request records yourself and submit them directly to Social Security.

Working With a Disability Lawyer

Many people with DiGeorge syndrome win their claims without a lawyer, but a lawyer can strengthen your case. A disability lawyer knows which medical evidence matters most, how to present your limitations persuasively, and how to appeal if you are denied. Lawyers are paid only if you win—typically 25% of back pay, up to a maximum set by law—so there is no upfront cost to you.

If you are denied at reconsideration, hiring a lawyer before the ALJ hearing is worth considering. The hearing is where most reversals happen, and a lawyer's experience with ALJ decisions in your region can make a real difference. You can find disability lawyers through the National Organization of Social Security Claimants' Representatives (NOSSCR) or by searching your state bar association.

Frequently Asked Questions

Will Social Security automatically approve me because I have DiGeorge syndrome?

No. Social Security approves claims based on medical evidence that your specific symptoms prevent you from working, not based on the diagnosis alone. Two people with DiGeorge syndrome can have very different outcomes depending on the severity of their immune deficiency, cardiac complications, or developmental effects.

What if my DiGeorge syndrome is mild and I have not had many infections?

You can still win on RFC grounds if your condition limits your ability to work any job. Mild immune deficiency, cardiac restrictions, or developmental delays can prevent full-time work even without recurrent hospitalizations. Medical records showing your specific limitations matter more than infection count.

Do I need to be hospitalized to may have access to for disability?

No. Hospitalization strengthens a claim, but it is not required. Social Security looks at whether you can work, not whether you have been hospitalized. Ongoing treatment, medication, or documented functional limitations can support a claim without hospital stays.

How long does it take to get a decision on my claim?

Initial decisions usually take 30 to 90 days. If denied, reconsideration takes another 30 to 90 days. If you request a hearing, the wait is typically 6 to 18 months depending on your local hearing office's backlog. You can work and receive benefits during the appeal process if you are eventually approved.

What if my doctor says I cannot work but Social Security says I can?

An ALJ hearing gives you the chance to present your doctor's opinion directly. Bring your doctor's written statement and, if possible, have them testify by phone. An ALJ must explain in writing why they rejected your doctor's opinion if they do not accept it, so a strong medical statement creates a record that supports an appeal if needed.