How Long Can You Live With ISM—and Does the Disease Usually Progress To Something More Severe?



Medically reviewed by Marla Anderson, MD

With proper treatment and management strategies, people with ISM usually have normal life expectancies.Credit: Charday Penn / Getty Images
With proper treatment and management strategies, people with ISM usually have normal life expectancies.
Credit: Charday Penn / Getty Images
  • Indolent systemic mastocytosis (ISM) is the most common form of systemic mastocytosis.
  • Though symptoms can significantly affect daily life, most people with ISM have a normal life expectancy.
  • Only a small number of people with ISM see the disease progress to a more serious, life-threatening form.

Getting an indolent systemic mastocytosis (ISM) diagnosis can bring up a lot of fear—especially about what it means for your future. Though ISM is a very rare disease, treatments have improved significantly in recent years, and most people with the condition have a positive prognosis.

Does Indolent Systemic Mastocytosis Shorten Your Lifespan?

The usual prognosis for ISM is a reassuring one—most research suggests that people usually have positive outcomes and normal lifespans.

ISM is the most common and least aggressive form of systemic mastocytosis (SM). SM is the umbrella term for a number of conditions characterized by an overproduction of immune cells called mast cells, which build up in organs and bone marrow (tissue inside the bones). The vast majority of SM cases, including ISM, are caused by a genetic mutation.

ISM is "indolent," or slow-moving, so progression to a more serious, advanced form of the disease is possible, but very uncommon.

When Can ISM Turn Into Something More Serious?

For most people with ISM, the focus is on feeling better day-to-day, rather than fighting a fast-moving disease. However, ISM can sometimes progress to advanced (SM), which is linked with organ dysfunction and a shorter lifespan. In one study, people who had their condition progress to advanced SM had an average life expectancy of 5 years.

However, the large majority of people with ISM do not develop advanced SM. In a large study, about 4.9% of people with ISM saw their disease progress to some degree, and about 2.9% advanced to a more aggressive form of SM. Other research has placed the risk of progression as under 3%.

Certain specific genetic changes and immune system markers may be linked to a higher risk of ISM progression. Your hematologist—a doctor who specializes in blood conditions—and the rest of your care team may help you assess whether you might be at a higher risk.

How Does ISM Affect Your Body?

While most people with ISM have normal life expectancies, living with the disease means managing ongoing symptoms that can affect quality of life.

Symptoms affect a number of different systems across the body and commonly include:

  • Skin flushing
  • Skin itching
  • Stomach pain
  • Diarrhea
  • Fatigue
  • Congestion
  • Brain fog

ISM also carries the risk of more serious symptoms too, such as:

  • Anaphylaxis: People with ISM have too many mast cells—these immune system cells, when triggered, release histamines and other chemicals that cause anaphylaxis, or allergic reactions. Anaphylaxis can sometimes be severe and life-threatening, particularly when swelling closes a person's airway or makes breathing more difficult. Researchers estimate 22–49% of people with SM develop anaphylaxis.
  • Bone pain: Bone marrow (the tissue inside your bones) is most commonly affected by ISM. That can lead to frequent bone pain or bone loss, called osteoporosis. This may raise the risk of bone fractures.

Many people with ISM report that their symptoms make it hard to keep up with daily activities or maintain regular work.

How Is ISM Treated and Managed?

To manage ISM, the goal is to stop the body's mast cells from releasing high amounts of symptom-causing chemicals. That usually involves avoiding any triggers that cause you to have an allergic reaction, in addition to using certain medications, such as:

  • Antihistamines: These widely-available drugs are usually the first step for ISM management. People with the condition may be encouraged to take H1 antihistamines—such as loratadine (Claritin) and fexofenadine (Allegra)—alongside H2 antihistamines like famotidine (Pepcid).
  • Epinephrine auto-injector (EpiPen): Because people with ISM are at a high risk of anaphylaxis, they should carry one (or maybe even two) EpiPens with them in case they experience an allergic reaction.
  • Targeted treatments: New treatments are being approved that directly target the underlying gene change that drives many ISM symptoms. Medications like avapritinib (Ayvakit) and midostaurin (Rydapt) have been shown to reduce symptom severity for people with ISM.

Because ISM can affect so many parts of the body, care often involves a team of specialists—including blood doctors, allergy specialists, and digestive health doctors—working together.

Next Steps

Your healthcare provider is the best source of information about your individual ISM prognosis. If you've been recently diagnosed, have honest conversations with your care team so you can better understand what to expect in the long term with ISM.

Avoiding triggers, monitoring bone health, carrying an EpiPen, and taking any prescribed medications are crucial ways to manage ISM. It's also important to get support from others—the Mast Cell Disease Society and similar websites offer ways to connect with others who have ISM, as well as written resources for patients and loved ones.



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Lululemon clothing is being investigated for PFAS.Credit: winhorse / Getty Images
Lululemon clothing is being investigated for PFAS.
Credit: winhorse / Getty Images
  • The Texas attorney general is investigating whether Lululemon clothing contains PFAS, commonly known as “forever chemicals.”
  • PFAS are widely used for stain- and water-resistant products, but their long-term health effects are still not fully understood.
  • Experts say exposure from clothing is likely low, but there are some signs to tell if your clothes contain PFAS.

Texas Attorney General Ken Paxton announced Monday that his office is launching an investigation into whether clothing from the athleisure brand Lululemon contains per- and polyfluoroalkyl substances (PFAS), long-lasting compounds commonly referred to as “forever chemicals.” The investigation has thrust these chemicals—linked to a range of negative health outcomes and used in a variety of products—into the spotlight. Here’s what to know about the Lululemon probe, PFAS, and what it could mean for your health if these compounds are lurking in your clothing.

What's the Investigation About, Exactly?

According to a press release from Paxton’s office, the investigation will examine whether Lululemon’s clothing contains PFAS "that their health-conscious customers would not expect based on the brand’s marketing.” The office “will also review the company’s Restricted Substances List, testing protocols, and supply chain practices to determine whether Lululemon’s products comply with its stated safety standards,” the release continued.

Per the release, the allegations stem from "emerging research and consumer concerns."

Lululemon, meanwhile, denied using PFAS in its apparel, which includes leggings, workout tops, and casual athleisure wear. In an email to Health, a company spokesperson said: 

"The company phased out the substance in FY23, which had been used in durable water repellent products, a small percentage of our assortment. The health and safety of our guests is paramount, and our products meet or exceed global regulatory, safety, and quality standards. We require all our vendors to regularly conduct testing for restricted substances, including PFAS, by credible third-party agencies to confirm ongoing compliance.”

What Are PFAS?

PFAS is an umbrella term for a class of chemical compounds used in a wide range of everyday products, including furniture, carpets, paint, food packaging, and clothing. They’re often added to fabrics for their stain-resistant or water-repellant properties, said Alex LeBeau, Ph.D., MPH, CIH, a toxicologist, certified industrial hygienist, and owner of Exposure Consulting in Orlando, Florida.

These compounds—which number in the thousands—have been dubbed “forever chemicals” because they don’t break down easily and have been discovered in soil, air, water, and in animals. They’ve been found in humans, too. Nearly everyone in the U.S. has measurable amounts of PFAS in their blood, according to the Centers for Disease Control and Prevention. 

How Harmful Are PFAS?

Scientists still don’t fully know how PFAS affect human health. The chemicals can be particularly challenging to study because the category includes thousands of compounds, products contain varying levels, and exposure can come from many sources.

Two of the most widely studied PFAS—PFOS and PFOA—were phased out in the U.S. in the 2010s, LeBeau said. Those long-chain PFAS, which tend to accumulate in the body and stick around for longer, were largely replaced with short-chain alternatives, which are thought to be less bioaccumulative but may still raise health concerns.

Much of the research into PFAS has focused on what happens when people ingest them through water or food. A 2025 study found a link between PFAS in drinking water and increased incidence of digestive, endocrine, respiratory, and oral cancers. Still, LeBeau said that overall, “the health impacts are still up for debate in the scientific community.” Many human studies have produced mixed results, and much of the existing research has been conducted in animals.  

While it’s possible for PFAS to be absorbed through the skin from clothing, LeBeau said it’s not considered as concerning as ingesting the chemicals. “Dermal PFAS uptake does not appear to be a concerning PFAS exposure route into the body,” he said. “Limited animal studies have suggested that PFAS may permeate the skin, but skin impact may also depend on the PFAS chemical form.”

How to Know If Your Clothing Contains PFAS

There is no federal law requiring clothing manufacturers to stop using PFAS or disclose whether their products contain them. Although, some states have banned their use in apparel and other products, and many well-known brands have said they are voluntarily phasing them out—including Lululemon. 

While LeBeau said people should be most concerned about PFAS in their food and water, it's understandable to want to avoid potentially harmful chemicals altogether. Unfortunately, it's not always easy to tell whether clothing contains PFAS—but there are a few clues.

One is if a garment is labeled as being made with GORE-TEX or Teflon, both of which are PFAS-based materials. Clothing marketed as moisture-wicking, waterproof or water-repellant, or stain-resistant is also more likely to contain PFAS. It’s also a good sign if a brand explicitly labels a product or line as PFAS-free and that claim has been verified through third-party testing.



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