ITP Convention 2018 - Roundup

We recently held our Annual ITP Patients Convention, this time, following requests from members we took the Convention to the beautiful City of Chester and its historic racecourse in the North West of the Country.

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Speakers Presentation Slides from the 2018 ITP Support Association Convention

The Speakers Presentation slides from the recent ITP Support Annual Convention (held in Chester) are now availbale to view. All slides are in PDF format.

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ITP Clinical Centre Survey Results

In late 2017 we invited patients who attended the various ITP Clinical Centres around the country to complete a short patient satisfaction survey. We wanted to assertain the patients perception of how the centres were performing.

The responses to the questions showed that, overall the centre were performing to a high standard. Although the on-line survey closed in February we continued to receive paper surveys until the end of April with 245 surveys being recieved overall.

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ITP International Global Meeting1

Speakers Presentation Slides from the 2018 ITP International Global Alliance Meeting

The 2018 ITP International Global Alliance meeting was hosted by the ITP Support Association UK and organised by the ITP Support Assocation (United Kingdom) and the Platelet Disorder Support Association (USA), the meeting was held in Chester.

Speakers presetnation slides will be posted here as they become availbale. All slides are in PDF format. The Presentation Slides are the copyright of the individual speakers, the slides are for viewing only, copying and printing is restricted.

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Derek Elston, trustee of the ITP Support Association, tells PharmaTimes about his experiences of being diagnosed and living with the rare bleeding disorder

How were you diagnosed with idiopathic thrombocytopenic purpura and what were your symptoms?

I was first diagnosed in 1993 with ITP after working in the Far East for 14 months. At the end I was fairly shattered both with the intensity of the work and commuting regularly. After about four weeks, I decided to visit the doctor. He took a sample of blood.

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Holiday Arrangements Summary

Before you go:

  • Order the ITP Support Association's Holiday insurance and Travel Guide, which includes advice on insurance, flying, avoiding malaria, medicines and vaccinations, It also includes insurance companies recommended by our members.  
  • If travelling to Europe get a European Health Insurance Card (EHIC) to entitle you to free or discounted healthcare in European countries.
  • Discuss any required vaccinations with your doctor well in advance, bearing in mind that they are not effective within 3 months of certain drugs.
  • Order medication well in advance, ensuring you have enough to last the holiday. Inform your holiday insurance company about your ITP, or you may find you are not covered in the event of a claim (they may require a doctor’s letter).
  • Try to find out what ITP is called in the country you are going to, in case of an emergency. You may be able to obtain this from the country’s embassy.
  • Find out what the equivalent of 999 is in the country you are visiting.
  • Find out the locality of the doctor and hospital nearest to your accommodation.

Make copies of all important documents, such as passports, and leave the copies with a friend of relative. You may need the copy if your originals get stolen.

If you take prescribed medicine, take a copy of your prescription and doctor’s letter. 

Is Air Travel Safe?

Risk of bleeding?

The question of safety in air travel is one that needs to be considered individually. It is generally considered that there is little risk of bleeding if the platelet count is greater than 30 unless there is a history of bleeding problems at this level. If the platelet count is below 20 there may be a greater risk, although this is not necessarily related to flying but to the condition of the patient. There is no clear correlation between a low platelet count and bleeding manifestations, so it is better to discuss this individually with the doctor who knows your symptoms.

The ITP Support Association’s medical advisors recommend that if the platelet count is around 30 or above and there are no bleeding problems, flying should present no additional risk. Some consultants express concern about their patients going on long-haul flights in pressurised cabins, but the Association’s medical advisors in the UK and US agree that they know of no evidence that there is any increased risk of bleeding relating to air travel.

The national ITP guidelines approved by the British Committee for Standards in Hæmatology (published in the British Journal of Hæmatology back in 2003 contained the following statement: ‘There is no evidence that air travel predisposes to bleeding in patients with ITP; there is no indication to treat the count prior to holidays other than to cover activities’ . There has been no change of advice issued since. However, if you are prone to nose or mouth bleeds that require medical intervention you should consider whether you could cope with this mid-air.

Deep vein thrombosis

The possibility of deep vein thrombosis on long-haul flights is now accepted as a recognised hazard for travellers. Extended periods sitting in a plane in cramped conditions (plus a spot of dehydration, booze and caffeine!) may encourage blood platelets to clump together in the veins to cause thrombosis. This is possible even with a low platelet count, and particularly with certain treatments.

Aspirin should always be avoided by thrombocytopenic patients, despite the advice to other passengers that it be taken when flying. Flexing toes, ankles and knees while seated, plus a periodic walk up and down the plane, will help to keep the blood moving during the flight. Drink plenty of water and avoid too much alcohol.

Last year many of you may recall that a group of rare disease stakeholders came together to form a Priority Setting Partnership (PSP) to find out what matters to patients, carers and clinicians in the field of Bleeding Disorders. Some people experience problems with bleeding throughout their lives as the result of an inherited disorder such as haemophilia or von Willebrand disease. Others may have long-term problems due to an acquired problem such as immune thrombocytopenia and finally some people may have experienced problems only after childbirth or surgery.  To this end the PSP launched a survey 12 months ago asking for people to consider which questions they think are the most important for researchers to be asking.

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