The symptom burden associated with systemic mastocytosis (SM) can vary significantly in terms of symptom type, severity and effect on daily life. Each person living with SM learns to avoid his or her symptom triggers to better live with the disease.
The loss of smell is less common in SM, but when it occurs, it can have implications for personal safety as well as one’s sense of taste.
What is SM?
Systemic mastocytosis (SM) is a rare hematological disease characterized by mast cells that are overactive and accumulate in different parts of the body such as the bone marrow, liver, spleen, gastrointestinal tract and lymph nodes.
Loss of smell as a symptom of SM
A reduced sense of smell (hyposmia) or a loss of smell (anosmia) is a relatively uncommon symptom of SM. It can occur when mast cells accumulate in the olfactory system. When histamine releases during an allergic reaction, it can cause swelling and block the nasal passages. This can limit the nose’s ability to detect smells.
Read more about SM signs and symptoms
In SM, the most common symptoms include skin reactions such as flushing; hives and itching; and digestive problems such as diarrhea, vomiting or abdominal cramps. Other symptoms include joint and muscle pain, heart palpitations and neurological symptoms such as mood changes, headache, fatigue, depression, anxiety and brain fog. Anaphylaxis can also occur and is a severe reaction with life-threatening potential.
Symptoms can also change as mast cells cause the body’s tissue and organs to deteriorate as the disease progresses, leading to an enlarged liver, spleen or lymph nodes.
Each individual living with SM will have a different experience of triggers and symptoms. Diet and lifestyle changes, as well as medication, can help manage symptoms and maintain quality of life in people with SM.
Managing loss of smell
The first step to managing the loss or smell or a reduced sense of smell is to work with your health care team to avoid triggers and improve the burden of the symptom.
When you can no longer rely on your sense of smell to alert you to dangers such as smoke, be sure you are protected with smoke and carbon monoxide alarms. Be sure you stay alert when cooking to avoid burning your meal: Use a timer instead of relying on smell.
You may also find that your sense of taste is affected, reducing the taste of food to basic flavors such as sweet, sour, salty and bitter. Keep an eye on the “best by” dates on food to ensure you don’t eat any expired items.
Loss of smell as a side effect of antihistamines
Antihistamines and nasal decongestants can also affect the sense of smell in someone living with SM.
It may be difficult to determine whether the loss of smell you experience is related to SM or the routine use of antihistamines. Your health care team will need to investigate, so don’t delay in making an appointment to discuss your concerns.
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