Changing ITP together
Barbara lives in Vicenza in Italy with her partner and 8-year-old son, and has a busy lifestyle. Running a company with her partner and being president of a patient organisation, her life is pretty fast paced! Barbara also lives with immune thrombocytopenia (ITP), a rare autoimmune disease.
ITP reduces the body’s platelet count and increases risk of bleeding. The disease has a substantial, multifaceted effect on quality of life,1 and people living with ITP can find that the condition can improve or become worse without any clear cause.2 In particular, people with ITP may experience anxiety around platelet count fluctuations, possibility of relapse1 and fatigue,3 amongst other symptoms.
Barbara was diagnosed with ITP when she was four years old after her mother found bruises and petechiae (a rash of tiny red or purple spots) on her body. Her mother’s first thought was that someone was abusing her. Barbara’s mother took her to a paediatrician and there her journey with ITP started. Between the ages of 4–12, Barbara was treated with corticosteroids and spent a lot of time in the hospital. At the time, the diagnosis was something she didn’t understand well and spending time in hospital was scary. Barbara remembers not being able to see her mother as much as she would have liked and she repeatedly plotted how she would try to escape from the hospital.
Living with ITP is different for everyone, and for Barbara, her ITP symptoms disappeared for 20 years, before returning with a relapsing in her early thirties with stomach sickness and a seriously low platelet count.
‘What I learned in the years after is that my ITP changed. When I was a child, I never had major bleedings; as an adult, it happened. It was like my whole world crashed, I felt really betrayed by my body. I felt really lost because my ITP was not playing by our rules. That was really hard to accept.’
When commenting on the impact of her ITP, Barbara said
‘The biggest way ITP affects my relationships, social and work life, is fatigue. I don’t have a lot of symptoms normally but when my platelet count is low, I get really, really fatigued. I also experience severe brain fog when my platelets are very low. For example, when my platelets go below 10,000 I cannot remember a simple two-digit number for 10 seconds.’
The spectrum of fatigue often requires lifestyle changes 4, and for Barbara, this involves 10–15 minute rests throughout the day, and more sleep than others, which means sacrificing socialising and other activities in the evenings.
The importance of patient advocacy
Through her doctor, at the age of 33, Barbara was introduced to a patient organisation. Several years later, Barbara is now president of an Italian association for ITP patients, whose mission is to raise awareness around ITP, support people with ITP and provide physicians with information.
Barbara has noticed through her work that many physicians have knowledge gaps in how to treat ITP, or symptoms associated with the condition. Many physicians treat patients purely based on platelet count, and ignore the patient as a whole, or symptoms that affect quality of life.
‘Lots of physicians didn’t acknowledge fatigue as a symptom of ITP. When you say you’re affected and not having any kind of feedback, it’s really uncomfortable, and you feel not seen, not understood.’
Barbara and the ITP patient organisation are working closely with physicians to collaborate, and provide people with ITP with greater quality of care. And this work does appear to be steadily paying off.
Sobi’s ITP awareness campaign
In ITP, knowledge sharing is just one piece of the puzzle; maintaining dialogue between people with ITP, physicians and others involved in healthcare is essential. Barbara spoke to us as part of the ITP awareness campaign. This campaign is based on patient-reported experiences to help address misunderstandings associated with ITP, increase visibility of the disease as well as the need for patient-oriented management.
Sobi would like to thank Barbara Lovrencic for supporting the development of this story.
References
1 Immune thrombocytopenia (ITP) World Impact Survey (I-WISh): Impact of ITP on health-related quality of life. Cooper N, Kruse A, Kruse C, Watson S, Morgan M, Provan D, Ghanima W, Arnold DM, Tomiyama Y, Santoro C, Michel M, Laborde S, Lovrencic B, Hou M, Bailey T, Taylor-Stokes G, Haenig J, Bussel JB. Am J Hematol. 2021 Feb 1;96(2):199-207. doi: 10.1002/ajh.26036. Epub 2020 Dec 19. PMID: 33107998
2 Chandrashekara S. Indian J Pharmacol. 2012;44(6):665–71.
3 Immune thrombocytopenia: improving quality of life and patient outcomes - PMC (nih.gov)
4 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6267629/
*Photography by Jovi Peric