Because amyloidosis is such a rare condition, a lot of people are unaware that it even exists. In fact, only an estimated 4,000 people a year are diagnosed with amyloidosis.¹ Although young people can get the disease, most sufferers tend to be over the age of 55. Let’s find out why it’s so important to recognize the early symptoms.

What is Amyloidosis?

Amyloidosis is a condition that stems from a bone marrow disorder. Over time, an abnormal protein will start to accumulate inside the body. It can impact a wide range of different organs. Nerves can be affected as well. If you fail to seek treatment in a timely manner, these organs can become seriously damaged and completely fail.² Although amyloidosis cannot be fully prevented, the symptoms can be effectively managed.

Signs and Symptoms

Kidneys

When amyloid proteins start to accumulate inside the kidneys, removing urine from the body becomes far more difficult. There’s a good chance your lower legs and arms will start to swell. If the abnormal proteins continue to increase, kidney failure becomes a real possibility. A kidney transplant may be necessary in some cases.

Heart

If your heart develops amyloid deposits, it will become unusually thick. A stiff heart cannot effectively pump blood throughout the body. You will likely begin to experience shortness of breath and wheezing. Chest pain is yet another common symptom. Expect your breathing to worsen when performing strenuous activities. The extreme fatigue will be hard to ignore.

Digestive System

When dealing with amyloidosis in the digestive system, it’s easy to mistake the symptoms for those of the stomach flu. Some of the signs of the illness include nausea, diarrhea, bloody bowel movements, and constipation. Although you may have only eaten a small amount, the amyloid proteins may make your stomach feel full. Over time, you may even start to lose weight.

Skin

Amyloidosis can cause very noticeable changes in your skin. While some people may experience bruising, others will have purple tracts around their eyes. The skin and tongue can thicken as well.

Nerves

Amyloid deposits can certainly affect your nerves. Be on the lookout for a tingling sensation in your hands, legs, and arms. You may also feel a burning pain in these body parts. In severe cases, you will have a loss of temperature sensation.

Causes and Risk Factors

Amyloidosis is caused by abnormal changes of certain proteins. They will gradually start to deposit in various tissues inside the body. However, scientists don’t know for sure what actually triggers these gene mutations. Research shows that roughly 70 percent of the people diagnosed with the condition are male.³ If you have a family history of amyloidosis, you are definitely at a greater risk. In terms of race, African Americans tend to be impacted the most by amyloidosis. Of course, having a kidney disease dramatically increases your chances of being diagnosed with this condition.

Treatments

There are four main types of amyloidosis: AL amyloidosis, AA amyloidosis, dialysis-related amyloidosis, and hereditary amyloidosis. Each type will require a combination of different treatments. Diet certainly plays a role in the treatment of amyloidosis. The organ affected will have direct influence on the diet recommended by your doctor. For instance, patients who have amyloidosis in their kidneys may require a low-salt diet.

If you happen to have AL amyloidosis, chemotherapy will probably be the first line of treatment. It’ll help your body to clear the amyloid deposits. Unfortunately, there are some side effects to chemotherapy. There’s a big risk of chemotherapy damaging your bone marrow, which will ultimately decrease your white blood cell count. You must take special precautions to avoid getting an infection. Remember, a cure for amyloidosis has yet to be found. This means the amyloid deposits can reemerge at any time.

Stem cell transplants have proved to be very effective in the long-term management of amyloidosis. The bad news is that not everyone is healthy enough to receive a stem cell transplant.⁴ It’s best to try this procedure on organs that have not yet been seriously damaged.

As expected, taking daily medications will be a part of your treatment. While pain relievers can minimize discomfort, blood thinners will help prevent clotting. Your doctor will also need to closely examine the condition of your affected organ. Patients who have been on dialysis for a long period of time are prone to kidney failure. In many instances, the only solution is to get a kidney transplant. Congestive heart failure is also a major concern for some people.

Prognosis

11-1F4 Drug

Researches have been testing a new drug called 11-1F4. When administered to lab mice, 11-1F4 actually eliminated the abnormal protein deposits. Furthermore, a study found that it improved organ functioning in at least 60 perfect of the participants.⁵ However, this breakthrough drug is expected to be used in combination with chemotherapy.

Tafamidis

In the past, amyloidosis of the heart was viewed as a death sentence for many people. After being diagnosed, the overwhelming majority of patients were not expected to live longer than three years. A new treatment called tafamidis seeks to dramatically slow the progression of heart amyloidosis. The latest clinical trial by the New England Journal of Medicine has already proved tafamidis may lower mortality rates.⁶ Although the FDA has yet to give the okay for commercial distribution, it seems to be only a matter of time before tafamidis gets approved.