First Irish patient day in more than a decade for rare blood condition
On 13 April 2019, immune thrombocytopenia (ITP) patients from around Ireland, were welcomed to the ITP Support Association Patient Day in Dublin supported by Novartis. Chaired by Mr. Mervyn Morgan (Chief Executive of ITP Support Association), the meeting provided patients with an opportunity to discuss their experience of ITP with other patients and to learn about their disease from experts in the field.
Last held in Dublin in 2004, this year’s meeting featured talks from Ms. Nicola Harten (Clinical Nurse Specialist, Connolly Hospital, Dublin), Dr. Gerard Crotty (Consultant Haematologist, Midland Regional Hospitals, Tullamore, Portlaoise and Mullingar), Prof. Adrian Newland (Professor of Haematology, Barts and The London School of Medicine and Dentistry, Queen Mary University of London, UK) and Mr. Derek Elston (ITP Patient Mentor).
Additional highlights from the meeting included a Q+A session, an overview of the ITP pocket log and patient breakout groups. The meeting was attended by 55 ITP patients from across the country.
In her talk entitled ‘Managing symptoms’, Ms Nicola Harten spoke about how to manage disease symptoms and implement a supportive self-care strategy. Providing practical tips for everyday life, she provided clarity, comfort and support.
The main symptoms of the disease include bleeding, bruising, blisters, petechiae rash, abdominal discomfort, heavy menstrual bleeding, fatigue and worry. Empowering patients to help themselves, each symptom was discussed compassionately, with simple management tips offered.
Some practical tips to manage bleeding:
- Avoid excessive consumption of alcohol as it can diminish platelet counts.
- Some contact sports may need to be avoided; take advice from your doctor in this regard.
- Oral hygiene is very important in ITP, but if gum bleeding is a problem, avoid dental floss and use a soft toothbrush.
- Know the medications that can cause bleeding. Talk to your pharmacist or doctor when getting a new medication to make sure it is safe for you. Be sure to tell them that you have ITP.
- For women with heavy menstrual bleeding, there are medications/contraception you can take to alleviate this.
- For men, if bleeding while shaving is a problem, consider changing to an electric razor.
- If you are going for surgery, let your Health Care Professional (HCP) know at least two weeks in advance.
- Avoid deep muscle injections.
In his talk on ‘ITP Management-Treatment options’, Prof. Adrian Newland stressed how important it is for patients to own their illness and educate themselves on its various facets. He explained the individualised treatment approach and gave an overview of the classical and novel treatment options.
ITP is rare, he explained; the average GP may only see one or two ITP cases throughout the course of their whole career. Therefore, it is important that patients educate themselves on the illness and play a strong role in its management. The average haematologist in the UK, sees approximately one new ITP patient a year. It is important that patients find a HCP who understands their illness, and can support them on their journey.
His advice for patients:
- Own your illness- be your own best advocate.
- Educate yourself about your illness.
- Doctors are not always aware of what is worrying you. You must develop a good relationship with your HCP so you can discuss your real concerns.
ITP, previously called ‘idiopathic thrombocytopenia purpura’, is now known to be a disorder of the immune system, characterized by a reduction in platelet count, explained Dr. Gerard Crotty in his talk entitled; ‘Treatment of ITP; Practical Aspects’.
ITP affects all ages and in adults is mostly chronic with a variable course. Most ITP is primary, he told the audience, meaning that there is no other underlying cause of the reduced platelet levels. Secondary ITP, (caused by an underlying disease), is less common, but may also require treatment. Dr. Crotty reviewed the diagnosis, treatments and challenges of treating both primary and secondary ITP.
ITP is a diagnosis of exclusion, meaning that there no definitive tests for the disease. When a patient presents with low platelet levels, the haematologist investigates, to rule out other causes for the low levels.
Some practical advice from Dr. Crotty:
- Tell your HCP of other medications you are on, including homeopathic medicines.
- Give adequate notice to your HCP if you require an operation. We may need time to get your platelets up to a level that is safe for surgery.
- Pregnancy can affect ITP in an unpredictable way; it can improve or worsen. Plan pregnancy where possible and discuss with your HCP.
ITP Pocket Log App
Mervyn Morgan presented the ITP pocket log to the audience. Initially launched in the UK in 2017, the ITP pocket log was developed by Novartis, in conjunction with the ITP Support Association.
This app helps patients to manage their disease and optimise discussions with their HCP. There are several functions to help patients keep track of their symptoms, test results, medications etc.
Data entered by the patient will be held within their device and will not be transferred to a third party. It could however, if desired by the patient, be downloaded to be shared with their HCP.
The ITP pocket log will be available in Ireland from August 2019. More information to follow.
Photos from the Event