How ITP Patients and Doctors Perceive Fatigue Differently — and How Journaling and Setting Goals Can Help
For patients, it’s about symptoms that impact their quality of life. For physicians, their focus is on the clinical signs and consequences– platelet counts and bleeding.
Addressing the disconnect between patient and physician perceptions of fatigue
Both physicians and patients agree that addressing fatigue is one of the most important goals in treating immune thrombocytopenic purpura (ITP) since, not only is it a common symptom, but it can have great impacts on daily life.
However, a study revealed a disconnect between patients and doctors on the level of impact that fatigue may have, with physicians underestimating how much it affects the patients in their practice. This finding was revealed in the ITP World Impact Survey (iWISh) a worldwide survey of over 1,500 people with ITP and 477 physicians who treat patients with ITP. The study results showed that, although 30–37% of physicians reported hearing about fatigue at diagnosis, almost double (58%) of patients claimed fatigue as their most frequent symptom and three-quarters of those surveyed reported fatigue was one of the most severe symptoms of ITP at diagnosis.
This discovery may be due to the fact that physicians focus on the signs of the disease, such as the reduction in platelets, while patients are more concerned about the symptoms of the disease and to what extent they impact their lives.
It is well known that, besides the physical symptoms like fatigue, ITP takes a toll on a person’s mental and emotional health. The worry over whether platelets are going down or the disease is progressing can cause emotional stress. You can experience a rollercoaster of emotions over whether treatment is successful or if there are troubling side effects. For example, people taking steroids reported weight gain or mood swings, and would only use these medications if they had no other choice.
The iWISh survey found that, even though increasing platelet count was one of patients’ top three goals from ITP treatment (aside for remission or a cure), the second top desire was preventing episodes of ITP from worsening and increasing energy levels, which reflects the impact of fatigue.
New study finds that setting goals can reduce fatigue
In a study of people with chronic illnesses such as fibromyalgia, arthritis, and inflammatory bowel disease, having a spirit of hopefulness reduced fatigue. A person who can identify a personally meaningful goal and work towards achieving it may feel less stressed and therefore less fatigued. Setting a goal can give them hope and increase their engagement in their disease management.
Managing fatigue through a health journaling app
People with ITP have also found that having an app to track their fatigue and emotional health was useful in their dialogues with their specialists. It particularly helped in getting doctors to understand the impact of fatigue and to provide recommendations on how to address it.
Try Know Rare’s HealthStoryAI journaling app, which, not only allows you to track your symptoms and tests, but also provides you with an insightful summary of your journal entries and responses from a standardized fatigue survey. Arm yourself for a better discussion with your specialist!
Source: Patient-centric care in primary immune thrombocytopenia (ITP): shared decision-making and assessment of health-related quality of life, Maitlanda H, Lambert C and Ghanima W. HEMATOLOGY2024, VOL. 29, NO. 1, 2375177https://doi.org/10.1080/16078454.2024.2375177
Latest from Know Rare
From prenatal uncertainty and postpartum anxiety to therapy, grief, and hope, a mother shares her experience raising a child with a rare disease, navigating the healthcare system, finding community, and learning to embrace a different—but deeply meaningful—path as a parent.
A Danon disease study, led by researcher Dr. Barry Greenberg and published in the New England Journal of Medicine, wins an award! The study focuses on gene therapy as a potential treatment option for Danon disease. The study showed early signs that gene therapy may help the hearts of people with Danon disease.
A poster, presented at the European Hematology Association meeting in June, described a study that looked at tiredness (fatigue) in adults with immune thrombocytopenia (ITP). Researchers wanted to see if fatigue was related to bleeding or other health test results.
Lucky Shanmugan was recently featured in Porter Ranch Living, his local magazine, for Father’s Day: in his interview, Lucky talks about Osteogenesis Imperfecta, a rare genetic or heritable disorder of the connective tissue, and the incredible journey towards his official diagnosis.
Here are 9 things Chris Anselmo wishes someone had told him after his rare disease diagnosis.
A family’s hardships and resilience in finding answers and getting a diagnosis for their child, after numerous tests, brain biopsies, and hospitalizations. And the relief but also grief in finally putting a name to the rare disease that affects their child: BCL11B-related disorder.
The Danon Foundation boldly empowers people living with Danon disease, providing trusted information, resources and support to help navigate life, from diagnosis to treatment.
For many families, caregiving for a child with a rare or medically complex condition is a full-time job. The problem is, it’s a job with no training, no time off, and no clear job description. If you’re looking for the light at the end of the tunnel, you don’t have to search alone. Check out some of Paige’s favorite resources.
For most of celiacs, despite months on a strict GF diet, energy stays low and blood work reveals nutrient deficiencies. The lesson? A "gluten-free" label isn't a health guarantee—just a guarantee you'll pay more.
If you’ve been told you have seronegative NMOSD, there’s nearly 50/50 chance you have a different antibody causing your symptoms –MOG antibody.
Therapy Near Me is a nationwide mental health service based in Australia, providing easy access to psychologists, counsellors, behaviour support practitioners and social workers.
At the annual Kidney Week of the American Society of Nephrologists (ASN), the world’s largest kidney healthcare professional organization, new advances in research were highlighted. Over $35 million has been invested in research with the ASN, and there are many treatments in development for IgA Nephropathy (IgAN), with researchers actively investigating more than 20 different drugs.
When I was diagnosed with celiac disease, I thought avoiding bread and pasta would be enough. I quickly learned that living truly gluten-free is far more complex, and I'm sharing my experience to help newly diagnosed individuals understand what lies ahead.
Retinopathy is an eye problem that many people with Danon disease have. It can cause dark spots in the outer part of the eye, blurry or worse vision, and unusual test results on an eye exam. Sometimes these eye changes show up before heart problems, so an eye check can help find the disease early.
A heartfelt story about a mother who found purpose and strength among the tragedy of losing a child diagnosed with an ultra rare genetic disorder.
Kaya Girl Legacy, Inc. is a Florida-based nonprofit founded in memory of Kaya Humbert, a beautiful baby girl born with Sphingosine Phosphate Lyase Insufficiency Syndrome (SPLIS), one of 46 known cases worldwide. The foundation is dedicated to empowering families with knowledge about their genetic health and advocating for early access to genetic testing and rare disease awareness.
A prose poem by Jim Kuhn, a rare warrior living with Sarcoidosis, a rare inflammatory disease.
Rare Mom Laura shares how her family’s prep for Halloween turned into a burst of familial love and creativity, as they all worked together in designing and building a costume for Alden, her medically complex son.
Instead of starting with a newly discovered drug compound, PCOR is a type of research that starts by turning to patients and caregivers and asking, What matters most to you? What questions do we want answered? What symptoms do we wish were better managed? What keeps us up at night?
Four years ago, Michael Grivas’ life suddenly changed when he learned that he had Brugada Syndrome, a genetic disorder in which the electrical activity of the heart is abnormal due to channelopathy. Learn more about his story.
Fatigue is a very common and often debilitating symptom of IgAN. It is linked to disease progression and reduced kidney function, but other factors like inflammation, anemia, and mental health also play a role. In a 2025 study, the majority of patients with IgAN reported fatigue, and patients with more severe proteinuria and lower kidney filtration rates (eGFR) experienced worse fatigue.
Why is it so hard to accept help? Humans often associate help with weakness and loss of independence and control. However, if we reframe our thoughts, accepting help can be viewed as a form of empowerment: showing vulnerability and trusting someone to help us requires great strength.
There is so much mental load with having a rare disease. Rare Human Lindsay shares there are things she does not care about anymore, as she manages rare disease symptoms, specialists, and clinical trials.
Rare Human Lindsay shares her "silver linings." It's not 'what doesn't kill you makes you stronger,' instead it's what doesn't kill you makes you braver. She shares that she has found deeper connections with others, improved her ability to ask for and accept help, and not been as afraid of the word "no."
Journalist and rare disease advocate Lindsay Guentzel breaks down why clinical trials are a lifeline for the rare disease community. With only 5% of known rare diseases having an FDA-approved therapy, trials often represent the only path toward treatment, progress, and hope.
Lindsay was diagnosed with dermatomyositis a couple of years ago. Since then, she has undergone more than 350 doctor appointments, 250+ hours of infusions, 10+ ER visits, while juggling insurance approvals, rides, and her pain and fatigue.
Rare Human Lindsay is in the midst of her first clinical trial for dermatomyositis, a rare inflammatory disease that primarily affects the skin and muscles. So far, she has learned so much about the process and is eager to share some of her insights with the rare disease community.