Are you often asked, “Do you have a cold?” or “Are you OK?” If you’re living with amyloidosis that affects your larynx, you may be tired of answering these questions. Unfortunately, some symptoms of laryngeal amyloidosis, such as voice changes, may bring your condition front and center more than you’d like.

Amyloidosis of the larynx can cause some surprising symptoms. The condition may impact your voice, breathing, or even how you eat. Here’s a look at how laryngeal amyloidosis affects the body, including six possible symptoms it may cause.

The Larynx and Amyloidosis

The larynx is a short section of your respiratory (breathing) system in the middle of your neck. This part of the airway connects your throat to your trachea (windpipe). The larynx is made up of three parts: the supraglottis, glottis, and subglottis. People often refer to it as the voice box because it contains the vocal cords.

Amyloidosis — a rare condition where a protein called amyloid collects in the body — can affect different organs. Symptoms depend upon where the protein builds up. Some forms of amyloidosis impact more than one organ (systemic amyloidosis), while others only affect one (localized amyloidosis).

Organs that have amyloid buildup typically function poorly. When protein collects in the larynx, the physical presence of the amyloid deposits disrupts the normal structure. This can affect how you breathe and talk. It can even impact how you eat, since the muscles of the larynx help you swallow.

Around 15 percent of people living with systemic amyloidosis develop symptoms in their larynx. Localized amyloidosis of the larynx is rare. However, the larynx is the most commonly affected part of the head and neck in people with amyloidosis. Laryngeal amyloidosis is more common in men between 50 and 70 years of age, according to the journal Open Medicine.

Symptoms of Laryngeal Amyloidosis

The larynx plays a part in how you speak, breathe, and eat. Laryngeal amyloidosis can cause various symptoms that affect these processes. Here are six symptoms you or your loved one with amyloidosis may develop if amyloidosis is affecting the larynx.

1. Hoarseness or Other Voice Changes

Dysphonia (altered voice) is the most common symptom of laryngeal amyloidosis. This may be because laryngeal amyloidosis most often affects the glottis — the middle section of the larynx where the vocal cords sit. Often, the term dysphonia is used interchangeably with hoarseness.

One study published in the American Journal of Otolaryngology found dysphonia to be the most common symptom in people with localized laryngeal amyloidosis. The symptom was present in about 56 percent of people studied, with most having lesions in their true vocal cords. Lesions (unusual growth or areas of damage) also appeared in the false vocal cords — structures in the supraglottic larynx not involved in sound making that protect the airway.

2. Shortness of Breath

Dyspnea (shortness of breath) is another common symptom due to the larynx’s role in breathing. Some people with shortness of breath may feel like they can’t inhale enough air. Others may have a tight feeling in their chest or like they’re having to exert more effort to breathe than usual. The sensation of shortness of breath can be particularly alarming and should prompt timely medical evaluation.

The American Journal of Otolaryngology study found trouble breathing to be the second most common symptom of localized laryngeal amyloidosis. Dyspnea was present in around 26 percent of people with the condition.

3. Wheezing

Another symptom you may experience with laryngeal amyloidosis is stridor (a noisy, high-pitched breathing sound) or wheezing. This abnormal breathing sound results from a blockage in the larynx or the throat. Blockages that may cause stridor include an object or tumor, swollen tissues, and spasms in the vocal cords or muscles of the airway.

You’ll typically notice wheezing when inhaling. When you breathe in, your breath may sound high-pitched or musical. Contact your healthcare provider if you notice that you or a loved one is wheezing, because it may be a medical emergency, especially in small children.

4. Difficulty Swallowing

People with laryngeal amyloidosis may experience trouble swallowing, also known as dysphagia. Swallowing may be affected by amyloidosis because the larynx muscles help you swallow. Thus, a buildup of amyloid in the larynx can result in difficulty swallowing.

It may also be painful to swallow for some people with laryngeal amyloidosis. When you swallow, you may notice pain in your throat, esophagus, or mouth. You may also feel a stabbing pain in your chest or back. Some people with laryngeal amyloidosis have both pain and difficulty swallowing together.

5. Feeling Like Something Is Stuck in Your Throat

Something else you may notice with laryngeal amyloidosis is the sensation that something is stuck in your throat. This feeling of a lump in your throat is called globus sensation. It may occur on its own or together with painful or difficult swallowing.

Globus sensation is most often caused by acid reflux, but it can also be caused by inflammation near the throat and vocal cords. While globus sensation is usually harmless, it should be checked out if there are other throat symptoms or if there’s a known case of amyloidosis. This helps to make sure there isn't any buildup of amyloid or other structural issues in the throat.

6. Coughing

Coughing is another possible symptom of laryngeal amyloidosis. Whether someone experiences coughing or globus sensation depends upon where amyloid protein collects in the larynx and how big the amyloid deposits are. Coughing may be caused by tissue irritation from amyloid deposits, airway obstruction, or trouble breathing.

In some people, the coughing may produce blood or mucus with blood, which doctors refer to as hemoptysis. It may be hard to tell where the blood is coming from. With hemoptysis, the presence of mucus and air may give blood a bubbly look. If you notice that you’re coughing up blood, it’s important to be evaluated by a healthcare professional immediately to rule out any life-threatening causes.

What To Do if You Notice Laryngeal Symptoms

If you notice any of these symptoms in yourself or a loved one, it’s important to talk with your doctor. Your healthcare provider can perform a physical examination and refer you for diagnostic testing to determine the cause of your symptoms.

Amyloidosis is typically diagnosed by testing a tissue sample (biopsy) of laryngeal tissue. Imaging, such as laryngoscopy, may be used to confirm the diagnosis and observe lesion locations.

A full evaluation by your healthcare team can determine if your amyloidosis is isolated or part of systemic disease. Typically, treatment includes surgical excision (removal) or debulking (partial removal) of deposits of amyloid to improve symptoms and maintain function.

Follow Up With Your Doctor

If you’ve been diagnosed with laryngeal amyloidosis, make sure you’re checking in with your doctor regularly. After treatment, long-term follow-up is important in order to identify if amyloidosis comes back or gets worse. Tell your provider about any new or worsening symptoms to make sure you get proper treatment for the best outcomes. In particular, shortness of breath, wheezing, and some kinds of coughing may be serious and require urgent care.

Find Your Team

MyAmyloidosisTeam is the social network for people with amyloidosis and their loved ones. On MyAmyloidosisTeam, members come together to ask questions, give advice, and share their stories with others who understand life with amyloidosis.

Do you or a loved one have laryngeal amyloidosis? What symptoms have you experienced? Share your experience in the comments below, or start a conversation by posting on your Activities page.