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Amyloid light chain or primary amyloidosis is a rare disorder triggered by abnormal plasma cell activity in the bone marrow. This condition results in the production of a protein called amyloid that builds up in your organs and tissues. This amyloid buildup can make the organs not work properly.

Usually, this disease affects the heart and kidneys. However, it can also impact the stomach, intestines, nerves, spleen and skin. The prognosis depends on the type of amyloidosis that you have and if you get early treatment. The worst case scenario could be six months, while in some cases, life expectancy can be eight to 10 years after diagnosis. Half of all people with cardiac amyloidosis die suddenly and 75% of those deaths are due to heart failure.

AL amyloidosis is so rare that only 3000 people per year are found to have it in the United States. Warning signs of the disease include diarrhea or constipation and fatigue. Most people with the disease are men between the ages of 60 and 70. Treatment options include chemotherapy and a bone marrow or stem cell transplant. Early diagnosis and intervention are crucial for managing the disease and treating symptoms. However, there is no cure for amyloidosis.

Amyloidosis is a disease that occurs when a protein called amyloid builds up in organs, text concept background


These are the four major types of amyloidosis. Treatment approaches may vary depending on the type and severity of the disease.

  1. AL (Primary) Amyloidosis:
    • AL amyloidosis is caused by the abnormal production and deposition of immunoglobulin light chains (AL protein) by abnormal plasma cells in the bone marrow. It often affects multiple organs. These include the heart, kidneys, liver, and nerves.
  2. AA (Secondary) Amyloidosis:
  3. Familial ATTR Amyloidosis:
    • Familial transthyretin (ATTR) amyloidosis is an inherited disorder caused by mutations in the TTR gene. It affects the nerves and heart.
  4. Wild-Type (Senile) ATTR Amyloidosis:
    • Wild-type ATTR amyloidosis occurs due to the deposits of wild-type transthyretin protein in various organs. It affects the heart and can lead to heart failure. Also, it affects older individuals and is not inherited.


Qualifying for SSD benefits means you have a severe medical condition that prevents you from working at any job in the national economy. The symptoms of amyloidosis can be so severe that they prevent you from working. The SSA uses a five step review process to determine if they can pay you benefits.

If you are off work for over one year, then there are two types of Social Security benefits you can file for: Social Security Disability Insurance (SSDI) benefits and Supplemental Security Income (SSI) benefits. You can file an application online at the Social Security’s website for either one or both. Below, you can find an explanation as to each type of benefit:

Social Security Disability Insurance (SSDI):  

SSDI benefits are for those who can no longer work due to a severe medical condition. The amount of money you receive from SSDI benefits is based on the taxes you paid during your working years. To qualify for SSDI, you must have earned enough “work credits” to qualify.

A work credit is an amount of taxable income. You can earn up to 4 work credits per year. The amount of work credits you will need depends on how old you are when you apply. If you haven’t earned enough work credits at the time you apply, then you will only be able to file for SSI benefits.

Supplemental Security Income (SSI):  

SSI is a needs based benefit. It is for only those people with little to no income, such as children and the elderly. Anyone who makes more than a certain amount of money per month cannot receive SSI benefits. The SSA counts the income of those who live with you, such as a spouse, not just your income and assets.

If you have a spouse who earns more than $4000 a month, then that income will prevent you from getting SSI benefits. The same rule applies if you are living with a boyfriend and he is paying your bills. Also, the same rule applies if you are living with your common law wife and she is paying your bills. You cannot get SSI benefits, no matter how severe your medical condition, if you do not meet the income and asset rules for SSI.


The symptoms of amyloidosis vary from person to person, depending on the extent of amyloid deposits in the organs. Early recognition and prompt management of symptoms are essential to improve the quality of life for those with the disease.

  1. Fatigue: Those with amyloidosis often experience severe fatigue that does not improve with rest. This fatigue can impact your daily activities.
  2. Shortness of Breath: When you have amyloid deposits  in the heart and lungs, then you may experience shortness of breath.
  3. Edema in the Legs and Ankles: Amyloid deposits in the kidneys impairs their function. This leads to edema in the legs and ankles.
  4. Weakness: Muscle weakness may develop due to nerve damage caused by amyloid deposits.
  5. Unintended Weight Loss: Weight loss may occur despite even though you don’t change your normal eating habits. This happens due to intestinal malabsorption or loss of appetite due to the illness.
  6. Easy Bruising: Amyloid deposits weaken blood vessel walls, making them more prone to rupture and bruising.
  7. Peripheral Neuropathy in the Hands or Feet: Nerve damage caused by amyloid deposits can lead to pain and numb hands and feet.
  8. Enlarged Tongue: Accumulation of amyloid in the tongue can cause it to enlarge. This leads to problems with speech and oral hygiene.
  9. Skin Changes: Amyloid deposits in the skin may cause bruises, purple patches or spots on your skin, or your skin may look waxy.
  10. Heart Symptoms: Amyloidosis can affect the heart muscle which leads to symptoms such as chest pain and edema. Cardiac involvement can result in heart failure and is a significant cause of death in amyloidosis patients.


Treatment for amyloidosis manages symptoms and reduces the production of abnormal proteins. Here are the main approaches to treatment:

  1. Chemotherapy: Chemotherapy drugs are used to reduce the production of abnormal plasma cells in the bone marrow.
  2. Stem Cell Transplant: Chemotherapy followed by stem cell transplant may be considered for eligible patients who have responded well to initial treatment.
  3. Supportive Care: Symptomatic management is essential to address specific organ problems. This may include medications to manage heart failure. Or, medications to reduce edema and pain.
  4. Targeted Therapy: Newer targeted therapies may be used in combination with standard treatments to target amyloid proteins and improve treatment outcomes.
  5. Clinical Trials: Participation in clinical trials that investigate new treatments and therapies may be an option for some patients.
  6. Organ Treatment: In cases where primary amyloidosis has caused significant organ damage, such as heart or kidney involvement, specific treatments may be necessary. This may include heart medications, dialysis for kidney failure, or organ transplant.

It is essential for you to work closely with your doctors and medical experts. They will develop a treatment plan for your specific needs. Regular visits to the doctor will help with treatment.


The SSA uses the Compassionate Allowance list to quickly identify severe medical conditions that qualify for SSD benefits. The reason for the list is to identify diseases that are so severe they clearly prevent you from working. Also, the medical conditions on the list are more likely to result in an early death. There are two types of amyloidosis that are on SSA’s list. They are:

Cardiac Amyloidosis – AL type is a rare heart disease caused by deposits of abnormal protein in the heart tissue. These proteins slowly replace normal heart tissue causing the heart to become stiff. People with this disease often have problems with the way electrical signals move through the heart conduction system. This can lead to arrhythmias. Heart function also becomes reduced.

Renal Amyloidosis – In this form of the disease, amyloid deposits damage the kidneys and make it harder for them to filter wastes and break down proteins. When the kidneys become too damaged, they no longer function well enough to maintain health. This results in kidney failure. Kidney failure can lead to problems such as high blood pressure, bone disease, and anemia. Most patients with AL Amyloidosis die within two to three years from diagnosis.


Many people wait to apply for SSD benefits because they think they are going to get better. For example, you may have hurt your back at work. After physical therapy and other treatment, your doctor might decide you need surgery. Perhaps you believe that once you have back surgery you will be able to return to work. Unfortunately, there are times when surgery does not work.

The same is true if you have amyloidosis. If you wait to apply for benefits, then you may miss out on months or years of SSDI benefits. This is money that you need to support yourself while you are not working. Benefits can also provide Medicare or Medicaid, which is health insurance that you need to obtain medications and treatment. Learn more about Medicare benefits.

If you cannot work, then you should apply for SSD benefits immediately. You should not wait to apply until you go into remission. SSD benefits are based upon the number of years you work and the amount of money you earn.  The amount of the monthly benefit is different for everyone. If you cannot work due to your symptoms, then you can probably win benefits.


If you have amyloidosis, but your symptoms don’t meet the listing, then you can qualify for SSD benefits using your RFC. Your RFC is a set of restrictions that describes what you can and can’t do in a work setting. You can win SSD benefits, if you prove your RFC limits your ability to work at your past job and any other jobs.

Social Security will review your work history to see if you can perform your past jobs, despite the physical limits of your RFC. If you cannot perform your past work, then the SSA will decide whether you can perform an easier job.

The RFC is what is “found” at step four of the Social Security review process. Once the case moves to a hearing, it is the judge who will determine your RFC. You can win benefits by showing you cannot sustain 40 hours of work every week. Find out more about what questions the judge will ask at your Social Security hearing.

In order for the ALJ’s RFC assessment to comply with SSA’s rules, the judge must include a narrative discussion in the decision. The ALJ must describe how the medical evidence supports each conclusion. Also, it must cite specific medical facts.

The ALJ must discuss how the medical evidence supports your ability to perform work activities in a work setting. If you cannot sustain a 40 hour work week without the need to lie down, then you cannot work. Likewise, if you cannot remain seated for six hours during an eight hour workday, then you cannot perform a seated job. Every physical limit you have from amyloidosis should be in your medical records. If the medical records shows you cannot work, then you will win benefits.


In the last 30 years, we have won over 20,000 SSDI and SSI hearings for our clients. Additionally, we have won over $100 million in ongoing and past due SSD and SSI  benefits for our clients. During the time we have been in business, we have seen the SSA change their rules.

In our opinion, it has become far more difficult to win Social Security cases. Also, the medical evidence and listing rules are more difficult to meet. Those people who come to the hearing without a lawyer not usually successful in winning benefits.

If you have amyloidosis and you know you are not going to be able to work for more than 12 months, then apply for benefits. Also, you need to do it right away. Don’t wait, thinking you might go back to work. If you do go back to work, then you can withdraw the SSD application at that time.

Meanwhile, if you don’t go back to work, then you have started the process. SSDI benefits and SSI benefits are available to you if you start an application on the Social Security website.

Remember, to win SSDI and SSI benefits, you must first file an application. Many people believe that once they file an application, the SSA will pay them back in time to when their cancer began. That is not true. Benefits are tied to the date that you apply. SSI benefits begin on the date that file for benefits. SSD benefits can go back only one year prior to the date that you file your application, as long as you were not working.


We have won over $100 million in future and past due SSD benefits for our clients. You can only be paid SSD benefits after years of hard work and paying your taxes.

Therefore, SSD benefits are not welfare. When you work and pay taxes, the SSA puts aside benefits for you. They do this in case you experience a physical or mental condition that prevents you from working.

Your benefits are tied to the day you apply. SSD benefits have a five month waiting period before benefits begin. The six month waiting period applies to everyone. And, it doesn’t start until you file your SSD application. SSI benefits, on the other hand, don’t begin until the date of your application.

Past due SSD benefits can pay out one year prior to the date of application. You can receive past due benefits, as long as you were not working due to your medical condition. However, if you file for SSI benefits, then SSI benefits begin on the day you apply. This is true even if your severe medical condition began prior to that date. Therefore, every day you wait to apply is a day you are losing SSDI and SSI benefits.

We know you need benefits to replace your income. Over the past 30 years, we have won over 20,000 SSD and SSI cases. We want to win your case too. Contact us today for your free review of your case. Let us help you win SSDI and SSI benefits for amyloidosis.

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