The Charity Shop

 

The Charity Shop, in aid of The ITP Support Association & The Fishermen's Hospital.

73 St Nicholas Road, Great Yarmouth, Norfolk, NR30 1NN

Tel: 01493 855614

Open: Mon-Fri 10am - 5pm Sat 10am - 4pm.

 

 

There are many easy ways that you can make a donation to The ITP Support Association.

All donations large or small are very much appreciated.

The ITP Support Association depends entirely on support from its friends and helpers and, of course, all donations are very gratefully received. This helps us to maintain the service we offer to those with ITP and their families and boost our Research Fund. But those who pay income tax can increase the value of their donations to the ITP Support Association without it costing them one penny more.

Read more ...

Shingles vaccines and ITP

Please note that this general advice on the shingles vaccine has been obtained from one of the Association's medical advisors, but it does not replace any advice given to you by your consultant or GP who knows you and your ITP.

The shingles vaccine is available through the NHS to patients whose birthday must fall within specific dates. It is not licensed for people under 50. (It is available privately from about £150 upwards.) The vaccine will reduce (but not completely prevent) the risk of developing shingles, or recurrent shingles in those who have previously had an episode.

The vaccine itself is a weakened form of the zoster virus that causes chicken pox or shingles. Itself it will not cause either of these infections although may cause some blistering at the site of the injection. It cannot be given to patients who are in any way immune suppressed and is contraindicated for patients on steroids, and any other form of immunosuppressant chemotherapy. It would be fine for someone who has had a splenectomy in the past provided they are off all other treatment.

The vaccine itself is very unlikely to cause thrombocytopenia, and the ITP Support Association is not aware of anyone in whom this has happened. In the very rare case, were it to occur, it would be transient as with other vaccines.

NHS page on shingles vaccinations.

 

We are grateful to Professor Adrian Newland for his assistance on this page.

Influenza Vaccine and ITP

Please note that this general advice on the influenza vaccine has been written by one of the Association's medical advisors, Dr John Grainger, but it does not replace any advice given to you by your consultant or GP who knows you and your ITP.

The influenza vaccine has been linked to the development of ITP in a small number of adults and may cause a dip in platelet counts in children or adults receiving the vaccine. However, the risks are higher for children (or adults) who are unvaccinated and develop influenza.

Newly diagnosed ITP (Within 3 months of diagnosis)
My preference is to avoid the ‘flu vaccine unless there are other co-existing medical conditions, such as cardiac disease or asthma.

Persistent or chronic ITP (after 3 months from diagnosis)
The ‘flu vaccine can be administered. Patients should be aware that there is a small risk of a platelet drop in the 4 weeks following vaccination so may wish to consider timing if there are any planned operations, dental procedures or overseas holidays.

Live vaccine (nasal) or Inactivated vaccine (intramuscular)
Patients who have been on steroids in the last 28 days or rituximab in the past 12 months should not receive the live vaccine. For patients receiving the inactivated vaccine by IM injection there is a need for firm pressure to be applied over the site of injection for at least 10 minutes.

 

We are grateful to Dr John Grainger for his assistance on this page.

MMR and ITP

Unlike the publicity and doubts surrounding claims of a link between the MMR triple vaccine and autism en.wikipedia.org/wiki/MMR_vaccine_controversy clinicians are in agreement that evidence exists of a risk, albeit very small, of the MMR vaccination causing ITP. It was reported in The Lancet in March 95 that there was a causal association between ITP and the MMR vaccine with the risk assessed at 1 in 24,000 vaccinations. Findings from this study were consistent with the view that ITP results largely from the rubella component of the vaccine.

The Principal Medical Officer at the Department of Health (UK), points out that this side effect is listed (although not by the name ITP) on the MMR leaflet issued to parents at the time of vaccination. It states "your child may very rarely get a rash of small bruise like spots due to the rubella part of the immunisation about 2 weeks after the MMR. If you see spots like this, consult your doctor. "

In a subsequent study published* in March 2001 in the Archive Diseases in Childhood (a specialist magazine for paediatricians published by the BMA) researchers from the Public Health Laboratory Service and the Royal Free Hospital analysed certain hospital records of children under the age of 5 who were admitted with ITP within 6 weeks of having the MMR vaccination. Combining data from this and the previous study it was calculated that 2 out of 3 cases of ITP that occur within the six weeks after immunisation are caused by the MMR vaccine. Unlike the earlier report, both the measles and rubella components are now considered likely candidates. *2001; 84: 227-229

Children with MMR induced ITP typically have the transient self-limiting form of the disease with reduced platelet counts (but not dramatically low) and milder symptoms. Generally, no treatment is needed. Importantly, there is clear evidence that those who have already had ITP are at no greater risk of recurrence as a result of the vaccination. There is no evidence that MMR is causally related to chronic, long-lasting childhood ITP.

The risk of ITP developing as a result of the MMR vaccination is now estimated at 1 in 22,300 doses, but this is considerably less than the risk of ITP developing following the illnesses themselves. Measles induced ITP is common, rubella is estimated at 1 in 3000 cases, and even mumps is occasionally associated with ITP. Of course, there are many more serious complications of these diseases than ITP.

Advice from the Association's medical advisors is that the fear of ITP is no reason to avoid vaccination, either for children who have had ITP before or for those who have never had it. Children are much more likely to come to harm from the diseases the vaccine prevents than from the few and rare side effects (such as ITP) associated with the injection. Children who develop ITP within 6 weeks of the MMR vaccine can have a serum test to check if full immunity has been obtained, rendering a booster unnecessary.

The NHS publish information on MMR side effects.

Please note:
Although every effort is made to ensure that the information given on this website is correct and up to date, the Association cannot be held responsible for errors or omissions. Association personnel are not able to give clinical advice, please contact your personal clinician.

Vaccinations and ITP

The ITP Support Association has made every effort to ensure that its information about vaccinations is accurate, but cannot accept liability for any omissions, errors or outdated advice in the Content.

The information given about vaccines has been prepared for general information purposes only. It is not intended to be relied on as a substitute for professional medical advice. Information contained in the content of the vaccination pages should be discussed with your treating doctor, before making any decisions, taking any action, or failing to take any action, based on that Content.

An Ounce of Prevention

Questions about ITP and vaccinations usually come about in one of two ways. First, is there is a link between vaccinations and the development of ITP? Second, can people on medications that weaken the immune system, such as corticosteroids or rituximab, safely receive vaccinations? Vaccinations cause our bodies to react to a particular bacteria or virus and create a response from the immune system. This way the next time our body sees that bacteria or virus it is ready to fight and prevent us from getting the disease. Some vaccinations use bacteria or viruses that are killed, while others use live bacteria or viruses. Because vaccines are “stimulating” the immune system there is concern that this can lead to “confusion” of the immune system, causing the body to have an incorrect response and produce antibodies against one of its own cells. This is what happens in ITP, when the body produces antibodies against its own platelets.

As a pediatrician the question about the link between ITP and childhood vaccinations comes up frequently since children receive a number of vaccinations. The best information we have on this question is with childhood ITP and the Measles, Mumps, Rubella (MMR) vaccination. This is a common live vaccine given between 12-15 months of age and then again between 4-6 years. The rate of ITP following MMR vaccination is about 1 to 4 cases for every 100,000 vaccines given. However the rate of thrombocytopenia following natural infection with rubella or measles is much higher, anywhere from 6 to 1200 cases for every 100,000 infected individuals. ITP that develops following the MMR vaccine typically occurs about 6 weeks after the vaccine. Much like non-MMR ITP, it is usually mild with significant bleeding being very rare and in 90% of children the disease is completely gone at 6 months. What about the child who has a history of ITP and needs their vaccination? Based on a review of cases, giving the first or second MMR vaccination to patients with a history ITP does not lead to recurrence of the thrombocytopenia. In some cases, if the child has already received one vaccination, it is reasonable to have the child tested for a response to that vaccination and only provide further vaccination if no response is seen. When I talk to families of children with ITP, I try to offer reassurance and we discuss that it is better and safer for the child to receive vaccinations on time so they are protected from the natural disease.

If someone is on medications that weaken the immune system, there is worry that perhaps they could become sick from vaccines or the body will not respond appropriately. Vaccines may be less effective if the immune system is weakened. Any vaccines given during this time may need to be repeated after the effects of the medication on the immune system are gone. For example, patients who receive rituximab may not have a response to vaccinations for up to 6 months after the medication is given. It is also important to determine which vaccinations are safe to give. The Center of Disease Control (CDC) in the USA makes recommendations for vaccination during times when patients are on medications that can weaken the immune system. Based on the CDC recommendations all vaccines using killed viruses or bacteria can be safely given even when the immune system is weakened, however vaccines using live viruses or bacteria may need to delayed.

In the majority of patients with either a history of ITP or active ITP, vaccinations should be given on schedule. An exception should be made for patients who are receiving medications that may weaken the immune system. The most important thing is to discuss vaccinations with your doctor at the time they are regularly scheduled and before starting any new treatment.

Cindy Neunert, MD MSCS
Columbia University Medical Center
USA

MMR vaccination

Seasonal influenza vaccination

Shingles vaccination

Links:- ITP and medical sites

These links are to charities and to government and commercial organisations, some based in the UK, some based abroad. It is best to determine the publisher of any information presented before you make any decision about the impartiality of what you may find on these external sites.

 

Sites run by doctors and health organisations

These links will open in a new window.

UK ITP Forum. The ITP Clinical Centres website is intended as a resource for health professionals and to create a network of coordinated expertise to encourage better management, research and clinical trials.

UK ITP Registry. A website to assist haematologists who want to take part in three UK Registries (Adult ITP, Familial ITP and Evans' Syndrome), as well as providing additional information which will be of interest to patients with ITP.

UK Paediatric Chronic ITP Registry The UK Paediatric ITP registry is a multi-centre study designed to collect prospective data on all new cases of childhood immune thrombocytopenic purpura (ITP)

Patient UK provides information on health, disease and related issues and a useful Medicines A–Z which gives information on drugs including how they work, what they are used for, warnings and cautions, side effects and their effect on other medicines.

Traveldoctor.co.uk, A site giving comprehensive information and advice on all issues relating to traveller's health including vaccinations, travel medicines, diseases and first aid.

Quackwatch, an international organisation that highlights the less reliable aspects of medical treatment and raises awareness of health fraud.

Other Support Groups

These links will open in a new window.

www.pdsa.org The Platelet Disorder Support Association USA, was patient-founded in 1998 to educate and empower those with immune thrombocytopenia and other platelet disorders. Today, PDSA is a powerful force serving and unifying the global ITP community of patients, practitioners, caregivers, advocates and key disease stakeholders.

itpaustralia.org.au  ITP Australia - information for Aussies about ITP

The Patients’ Association is a UK healthcare charity which for nearly 50 years has advocated for better access to accurate and independent information for patients and the public. It helps thousands of patients and relatives every year, answering concerns and queries about any aspect of the healthcare system.

Rare Disease UK (RDUK) is the national alliance for people with rare diseases and all who support them.

Contact a family is a national UK charity that exists to offer advice and support to families with disabled or sick children.

Rathbone is a youth charity helping all young people to get trained and into work, including those with disabilities or special needs.

Funny Blood A UK group raising awareness of platelet function disorders.

Carers UK is a national charity led by carers who offer expert support and advice to those caring for a loved one.

AARDA is the American Autoimmune and Rare Disease Association, of which there is no UK equivalent at present. It gives a list of autoimmune illnesses which may be
useful for ITP patients who suspect they have a second or even third autoimmune disease running concurrently with their ITP.

The DAISY Foundation a US organisation founded in memory of an ITP patient to award nurses for exceptional care and compassion.

Government or official

NHS Direct Online and the NHS Evidence Health Information Resources website (formerly the National Library for Health)

UK Department of Health homepage.

UK Health Protection Agency.

BPL. Bio Products Laboratory BPL is a not-for-profit organisation, wholly owned by the British Government. The National Blood Authority (NBA) has overall responsibility for BPL, the Blood Centres in England and Wales and the International Blood Group Reference Laboratory (IBGRL). The NBA, BPL, IBGRL and the Blood Centres are collectively known as the National Blood Service (NBS). The NBA is directly responsible to the NHS and Department of Health.

PubMed, a service of the National Library of Medicine, includes over 15 million citations for biomedical articles back to the 1950's. These citations are from MEDLINE and additional life science journals.

OMNI offers free access to a searchable catalogue of hand-selected and evaluated, quality Internet resources in Health and Medicine. New resources are added to the database on a weekly basis.

Care Quality Commission. The CQC checks all hospitals in England to ensure they are meeting national standards, and theyshare theirfindings with the public. You can also share your experience of a hospital.

 

The school pupil with ITP

The majority of children with ITP feel well despite a low platelet count, and it is rare for them to need emergency medical treatment. They may require regular hospital visits for blood counts and/or treatment review, but most children or teenagers with ITP should cause little or no impact on classroom routine. Click on Childhood ITP or Teenage ITP to learn more about how ITP may affect your pupil.

How schools can support the pupil with ITP
On request we supply a School Information Pack which includes a Pupil’s Factsheet (for completion by pupil or parents) which can be pinned up in the staff room to alert all teachers to the constraints of this condition.

Some primary schools who feel they do not have adequate staff to supervise ITP pupils in the playground, allow the pupil to stay in and use a computer or play board games with a well-behaved friend.

As contact sports are not advised, the sports department may need to offer an alternative activity (referee, assistant referee etc). The pupil should not be left shivering on the side lines seeing everyone else having fun! ITP pupils, particularly teenage girls, may be embarrassed about bruises that are more difficult to hide when wearing sports kit.

The teachers, office staff or matron responsible for the school’s first aid are advised to read our booklet Guidelines for Schools, Clubs and Playgroups (included in our school info pack) to understand what symptoms the pupil is likely to have, when they should call the parents and the rare circumstances when the pupil should be taken to A&E or an ambulance called.

It is helpful for the headteacher, class teacher or head of year to meet with the parents to ascertain whether the pupil has severe or mild ITP, if the pupil is having treatment, how often the pupil is likely to have a hospital appointment etc.

ITP is a very worrying condition for parents, and most are happier if they know that the school will err on the side of caution and call them if there is any concern about the pupil.

Girls with ITP may have extremely heavy periods that sometimes last for a couple of weeks. It can be helpful for a female teacher or office staff member to be appointed as someone the pupil can approach if they run into difficulties. Girls with ITP are advised to carry a small bag with spare pads, and spare pants, but nevertheless they can feel poorly and fearful of getting caught out with flooding.

Schools need to be sensitive to the fact that other parents may notice the ITP pupil has excessive bruising and be suspicious about domestic violence.

Can your school help our cause?
The ITP Support Association is always grateful for funding to help us continue our work in supporting people with ITP and funding research.

Can your school help us by holding a fundraising event such as a non-uniform day in aid of ITP?

Please contact This email address is being protected from spambots. You need JavaScript enabled to view it. if you require further information about ITP, the ITP Support Association, or fundraising for the Association.

Press Information about ITP

What does ITP stand for?
Immune Thrombocytopenia.  ITP is an autoimmune disorder (Immune) causing a shortage of small cells in the blood known as platelets (Thrombocytopenia). ITP was formerly known as Idiopathic (of unknown origin) Thrombocytopenic Purpura (bruising) .

What is ITP ?
A rare disorder in which the body’s immune system destroys platelets in the blood. A normal platelet count is between 150- 400 (UK measurement). People with ITP can have a platelet count under 5.

What causes ITP?
For most people there is no known cause, but for others, particularly children, it can follow a simple viral infection such as a cold or sore throat. It has a slightly higher incidence in pregnancy and can also arise whilst taking some medications or following vaccinations. ITP can occur as a secondary condition to certain other illnesses.

Does it get worse over time?
No, unlike autoimmune diseases such as rheumatoid arthritis and multiple sclerosis it is not a progressive disease, but the risk of bleeding is present from the day the disease develops. ITP can go into temporary or permanent remission.

Who develops ITP ?
This condition can arise in anyone at any age, but acute ITP (less than three months duration) is more common in children, and persistent ITP (lasting up to 1 year) and chronic ITP (often lasting for years or lifelong) is more common in adults.

How rare is ITP ?
There are only 3000 - 4000 ITP patients in the UK at any one time. Most general hospitals will only be seeing one or two adults and children with ITP.

How serious is the risk of bleeding?
At present doctors are unable to predict who will have an episode of serious bleeding. Many people with ITP have few problems, whilst others have a more difficult condition which may need aggressive treatment. People with a count over 50 are much less likely to have severe symptoms than those whose count is in single figures. It is extremely rare for ITP to cause a fatal haemorrhage.

What is the treatment ?
Treatments, which are currently aimed at suppressing or confusing the immune system, all have their dangers and drawbacks, only temporarily raise the platelet count, but do not cure the disease.

What is the difference between ITP and hæmophilia?
Hæmophilia is inherited and permanent, ITP is not inherited, and platelet counts can return to normal. Hæmophilia patients are deficient in one of the 12 factors which act together to form a blood clot. ITP patients are short of platelets which work independently as the initial plug to stop blood leakage. In hæmophilia the patient is usually treated by replacement therapy. In ITP platelet infusions are only used in emergencies as transfused platelets, like the patient’s own platelets, are destroyed by their immune system in a matter of hours.

Is ITP contagious?
No it is not caught and can not be passed on.

Why is research into ITP necessary?
The ITP Support Association is funding clinical and data research to try to discover the possible causes of ITP, understand who is at risk of developing it, to predict the course of the disease, ascertain its most effective treatments and to find a cure.

This page is from the old website, new links and a greater selection of ITP Information leaflets will be available to members in the next few weeks.

Thank you for being patient.

Downloads (UK only)

Free publications, on receipt of SAE, (UK members only) Download order form

Gift Aid Declaration form, (UK tax payers only) with optional Standing Order form

Download form

A leaflet about ITP and the Association
(for other hospital patients or for fundraising etc)

Download leaflet
School Information Pack Download order form
Emergency card application form Download order form

PDF files open in a new window. PDF files require Abode's Acrobat software. If you do not have this software, it is available for Macintosh and Windows computers etc., directly from Adobe by clicking here.

Downloads for UK hospitals

The Association can supply ITP leaflets "Where to get help" that may be passed to patients or parents of children with ITP, If your patients/parents complete the tear off section and send it with an A5 envelope and two first class stamps, we will forward a free information pack, which includes "Know About ITP", the latest edition of The Platelet and other useful items.

Hospital Information Pack Download order form
International consensus on ITP Download
ITP Patient Leaflet Download leaflet
A4 poster available giving contact information Download poster
American Society of Hematology:-2011 Clinical Practice Guideline on the Evaluation and Management of Immune Thrombocytopenia (ITP) Download

Coming soon