The ITP Support Association

Registered Charity Number 1064480

Total raised
£4636.96 + £447.50 Gift Aid = £5084.46
Fundraising
£2290.00
+ £357.50 Gift Aid
Donations
£2346.96
+ £90.00 Gift Aid

About The ITP Support Association

The ITP Support Association is the sole UK registered charity supporting and representing the interests of patients, and the families of patients, with Immune Thrombocytopenia (formerly known as Idiopathic Thrombocytopenic Purpura), and funding research into the causes and best management of ITP.

The ITP Support Association was formed in 1995 to provide information and a support network for adults, and parents of children, with ITP.


Immune Thrombocytopenia is a frightening rare bleeding disorder in which the body’s immune system destroys platelets in the blood. Unlike autoimmune diseases such as rheumatoid arthritis and MS it is not progressive as the risk of bleeding exists from the day the disease develops. It can arise in anyone at any age, and affects three to four thousand adults and children in the UK. Its symptoms vary from one sufferer to another but include nose bleeds, mouth blisters, heavy periods, large multi colour bruises, petechiae, fatigue and, on rare occasions, internal bleeding. Treatments, which all have their dangers and drawbacks, are not always effective in raising the platelet count, and only rarely cure the disease.

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Current fundraising pages

Baby Got Track


Last month was awareness month for autoimmune disorders, in particular a disorder I was diagnosed with when I was 14 known as idiopathic or immune thrombocytopenia purpura (ITP)..try saying that after a few drinks. ITP is a very rare bleeding disorder in which the immune system destroys the platelets in the body. These platelets clot blood to prevent internal & external bleeds. ITP causes bruising, bleeding, extreme fatigue and in worse cases intercranial hemorrhage. The condition is treated with time, steroids, platelet transfusions, splenectomy & chemotherapy.

I struggle to put into words how difficult life became during and after this disease.I suffered an acute episode which came on quickly I was on day 12 of my cycle, my spots would not stop bleeding and I’d woke up covered in a odouress rash which I found out was actually petechiae which are capillaries of blood which leak out under the skin. There was no known cause for this. After a visit to the doctors for blood tests we received a call a few ours later urging an admission to hospital as soon as possible. Then the hard bit started.

The Doctor wrote my diagnosis down on a newspaper at my bed side. For just over 3 months I couldn’t bathe myself I couldn’t sleep in my own bed I had to have padding around me at night to keep me safe, someone watching and caring for me 24/7 to ensure I didn’t knock myself and cause further internal bleeding. This disrupted my education as I couldn’t go to school I couldn’t see my friends I couldn’t leave the house except for routine bloods at the hospital every few days. Prognosis was completely unknown acute episodes can go on for months to a year but the Doctor couldn’t guarantee that the disease would ever cure itself as my platelets were continuously being destroyed by my immune system. A normal range is between 150,000-450,000. Mine had fallen to 0 which put me at high risk of internal bleeding meaning I could die.
Fortunately after 3 months of steroid therapy and a good iron diet my platelets started to increase weekly to a stable range, the doctor had said I could start going out. The first time I went out was to B&Q with my parents and I just remember people stared at me, admittedly I was frightening to look at my whole body head to toe in bruises including the whites of my eyes. I often remember just thinking ‘will I ever look like me’ ‘will I be able to wear make up’ ‘will I get better’ ‘this just isn’t fair’. I stayed in remission from then up to the age of 22 when I got a related blood condition known as Henoch-Schonlein in which my body was able to fight off itself. I later found out there is genetic link and the cause may infact be hereditary.

It’s only until the last few weeks I’ve been able to talk about it as it has caused a lot of trauma and upset in my life. I’ve never spoken openly about the condition and how it’s physically and mentally made me feel when I talk about it, it physically hurts but now I’ve spent time researching to gain an understanding of the condition and talked through the experiences I am quite shocked to see how many people are struggling to overcome it.

It has made me want to try and raise some awareness and help in some way. Unfortunately I can not donate blood due to ITP but I’d love to reach out to others who may have had or be going through this to see how it all started for them and to maybe look to raising money for blood disorder charities. I don’t feel like there is the awareness out there it’s super rare and it’s something I would like to get involved with to help other people.
Thank you for taking the time out to read this
✌🏼♥️

Rachel Oldham

  • Health

Welshpool 10K

I am running the Welshpool 10K run and here’s why…
Just when you thought that you were invincible.

It’s the first bank holiday weekend of the year, the official start of the summer for most DJs especially those here in the UK. I was all set for four gigs over three days which included a celebrity wedding and performing after a highly regarded House music DJ only for the four to be cut down to two as I began to feel unwell during Friday’s events.

During the first two events I noticed that my mouth was filling with blood blisters and I just wasn’t thinking straight.

Me being me, I initially thought that the blisters in my mouth were ulcers and that maybe I was just coming down with something, so I continued to perform at the events and then headed to my hotel to rest.

After three to four hours sleep I woke to find that the blood blisters had got worse, literally bursting left, right and centre. I had also developed a rash on my forearms and lower legs (Petechiae) that I thought I could wash away in the shower! I immediately called my wife Angharad who suggested that I called for an ambulance, which would then lead to me being taken to the nearest hospital, Warrington.

Initially I was treated for potentially having meningitis, which is scary enough! Several hours later I would be informed that this wasn’t the case, in fact I had somehow kick started a condition called immune thrombocytopenic purpura, otherwise known as ITP.

In short, ITP is a bleeding disorder in which the immune system destroys platelets. Platelets are necessary for normal blood clotting, assisting in healing cuts and so much more. This rare condition affects around three to four thousand people here in the UK and when diagnosed as an adult it is highly likely to be chronic. So far no cure has been found however there are several treatments that can help those suffering enter remission for months, if not many years. No one knows why this condition exists or why it can be triggered to affect your immune system.

The average human has a platelet count of 150 – 400, when I was initially diagnosed at the hospital I had a count of 2. Within the space of two days I had a count of 0! Any external or internal bleeding could’ve literally killed me there on the spot.

As it was the bank holiday weekend and as the hospital didn’t have a haematology ward there was a lot of confusion between the doctors and nurses on the various wards I was situated until a haematologist from another hospital began to advise them on the next steps. Initially I was put onto a corticosteroid treatment, prednisone, combined with an IVIG, intravenous immunoglobulin. After five days in the hospital I finally got to meet a haematologist who advised that my platelet count had improved, climbing to 18 and that he was happy for me to return home and seek advice from a haematologist local to where I live thereafter, who was based at Shrewsbury.
So I was at home, on steroids and wondering what had happened to me, what had I done to allow my body to do this to me, what could I have done to prevent this?

None of the answers were coming to me and in fact I worked myself into such a huge frenzy that I suffered with the worse headache I’ve ever had in my life, I wouldn’t even wish it on my own worse enemy, I don’t think I have an enemy anyway, but still it was ridiculously painful and trying to hold back the tears made it worse.

I returned to hospital as advised by my GP and we would discover that my platelets had dropped again to a count of 6. Under new haematology advice I was placed on a higher dosage and a stronger steroid, dexamethasone, combined with another IVIG transfusion.
I would then remain in Shrewsbury hospital for just over a week where my platelet count would improve and I was allowed to leave with a count of 89, the highest since my initial admission. I was so relieved, yes the number was far from the average but it had climbed to a count higher than what was considered too dangerous to even operate on someone.

So I returned home, happy that my platelet count had improved however I wasn’t fully happy. The side effects of the treatment actually messed up my body. I could barely walk. My muscle memory had almost disappeared. The other thing that they forget to tell you about being on steroids is that you are hungry 99.99% of the day.

I was literally making myself a meal every hour, not healthy food either, endless amounts of chocolate, crisps, sweets, bacon, portion sizes bigger than my stomach, I piled on near on three stone in a few weeks, pushing my weight up from thirteen to sixteen stone. I also couldn’t sleep very well, I was wide awake every morning between three and four, just wanting to go down to the kitchen to smash a bowl of cereal followed by toast, then some French delicacy and then the piece de resistance a full on English breakfast, every day.

Mentally, I wasn’t in the right place. I had mood swings I never even knew I could have and I didn’t want to leave the house. I felt like everyone was looking at me. My first real day of full interaction was at my community’s yearly carnival and although everyone involved put on a fantastic day and everyone I met were incredibly supportive I just didn’t want to be there. However, it was so important that I was, this was when things would turn around for me.



Whilst in hospital, my parents suggested that they got me an exercise bike for my birthday, which I was lucky enough to spend at home with my family. So, a week or so later there I was, at home alone with an exercise bike.

Now, over the past 15 years since leaving home and moving to London to pursue my career in the music industry I had never, ever taken exercise seriously. Yes, there were a few gym memberships where the only person benefitting from it were the shareholders and I tried so hard to get back into football but because of my travelling across the world at weekends it was difficult to commit.

Please consider that now, after being diagnosed with ITP, I was advised that I could no longer play full contact sport. That’s a hard thing to take, even if I wasn’t participating at a decent level, I still couldn’t play 5-a-side!
So I finally get on the exercise bike and I start peddling away. Two minutes into it and my legs are shaking and I couldn’t do any more. The steroid treatment had really taken its toll on my body. I could’ve just given up then and there, I felt like this was my life, I was going to feel like this forever.

I remember I tried again the next day, I think I recall that I was on it for at least 5 minutes, suddenly with this improvement I felt a positive mind-set install itself in my brain and after further conversations with my haematologist we decided it would be best for me to start weaning myself off the steroids, I wasn’t myself, I didn’t want to be unhappy, miserable or a couch potato.

It would later turn out that the steroids weren’t doing anything to help me anyway. More treatment options were then exercised.

I started a new treatment. This time I was to receive an IV infusion of Rituximab, a treatment that is usually given to cancer patients alongside chemotherapy. This process would involve a weekly treatment session that lasted 6 hours over four weeks.
After the first week my platelet count had not improved and my haematologist started to mention the other potential treatments that I should consider. Within these treatments included the option to remove my spleen.

It was at this point that I decided that I wasn’t going to let anyone remove any part of my body unless I was knocking on deaths door.
I wasn’t to have any further blood tests for another four weeks after the final Rituximab IV infusion. During this time I focussed on eating better and I continued to ride my exercise bike, clocking up over 250 kilometres with my legs feeling a lot stronger along the way, which helped!

So four weeks passed and it was the day of the blood test. I was incredibly nervous, I think I went to the toilet at least three times in between having the blood drained from my vein and seeing my consultant!

The results were very, very positive. My platelet count had risen to 132! That’s just 18 under the average count. Both my consultant and I were really encouraged by this and I am now waiting in anticipation for my next platelet count, which will be on Friday the 27thof September, a special date as it falls during Global ITP Awareness Week.
I don’t just think that it has been a focus on the fitness and diet side of things that has assisted in a higher platelet count. I 100% believe that although they definitely contributed towards it, a happy state of mind has been essential. I’ve cut back on things that caused unnecessary stress and introduced things into my life that I want to do.
I’m now coaching junior football twice a week at Llanfair United and Newtown Academy, I’ve already gained my Football Association of Wales Junior Leaders award and I’m about to undertake my C certificate.
I’m back in the gym, eating as clean as possible, the odd cake here and there isn’t going to hurt too much and I’m spending more time with my family who more than deserve it.

My family have been amazing, my wife has been incredibly patient and my two sons have brought so much happiness into our lives. Our extended family and friends have been there for us and we will be forever grateful for their help and love.

I’ve got a long way to go but I think I’ve established that if I’m happy, fit and healthy then I’ll be more useful to everyone around me!
Who knows, perhaps I’ll be above average and the haematologist will tell me that I can play contact sports again. I know that I am going to own that pitch during my first 5-a-side game back!

So, this is why I am running the Welshpool 10K. I’m doing it to raise funds for the ITP Support Association who dedicate their time to promote and improve the general welfare of patients and their families by providing information, feedback from medical seminars, a listening ear and so much more.

Thank you so much for reading my story. I know that it was a long one but as you’ve got this far I would really appreciate your sponsorship, no matter how small or large.
Thank-you!Carl x

Carl Hanaghan

  • Health

Great North Run 2019

I am taking part in the Great North Run again on September 8th 2019 and this year I am raising much needed funds to support The ITP Support Association. As most of you will know, my son, Freddie, suffered from Immune Thrombocytopenia (ITP) in 2018/19. This is a very rare and relatively unknown condition with symptoms that were very confusing and scary for an adult to come to terms with never mind a 7 year old child. In a nutshell, following a viral infection, his immune system did not stop after killing off the virus and continued to attack and destroy the healthy platelets in his blood, thinking they were a foreign body. As a result, his platelet count was very low and this resulted in spontaneous internal bleeds as he didn't have sufficient platelets to clot his blood. He was incredibly brave and endured weekly blood tests to monitor his condition and he had to put on hold being a 'normal' 7 year old boy as he couldn't risk any bumps or knocks that may have caused an internal haemorrhage. Thankfully, Freddie had an acute version of the condition and his platelet levels stabilised in February 2019 and, fingers crossed, have remained stable. Not a lot is known about ITP as due to lack of funding, research into the condition has not moved on since the 1980's, therefore I would like to donate anything I raise to the ITP Support Association, the only UK based ITP charity, who fund research into ITP as well as providing a wealth of information and support to people with ITP and their families. Thank you for taking the time to read this and for your support. xxx

Susan Lee

  • Health

Stephane is running Ealing Half Marathon

ENGLISH (Traduction en francais en bas de la page):I am looking to raise awareness on a very rare autoimmune disorder called ITP (Immune Thrombocytopenia). About 120 people are diagnosed with this disease every year in UK and I’m part of the lucky one for 3 years now!. I am not usually somebody that would put such personal information online, however, this is a subject very close to my heart and I would like to do whatever I can to help the ITP Support Association so that they can do more research on the disease.
Some of you might not know but I’ve been diagnosed with ITP on the 14th of February 2016 a few hours before leaving for a family ski trip that I had to obviously cancel and swap it for a hospital trip…
ITP causes your body to destroy your platelets and therefore your blood doesn't clot properly. This can cause a range of symptoms including excessive bleeding, bruising and mainly we are told to avoid any activity at risk of head injury. So I stopped cycling to work and avoided any sport of contact such as tough mudder race and skiing like crazy….
There is no specific test for ITP, it’s more a case of all other diseases being ruled out first and that is the only other thing left (not much fun whilst you wait for 1 week for all the various blood test results to come back to rule out a long list of nasty diseases)!

It's not hereditary and you can't pass it on to others, and in my case we don’t have a clue of why I got it... A normal platelet level is between 150k-400k, mine was around 19k when I was diagnosed and recently dropped down to 17k due to a viral infection. After a first treatment of very high dose of steroids my platelets count increases slightly and I’m now stable around 30k-40k which means that I have to be careful in my everyday life. Any cold, virus or infection will boost my immune system and therefore bring my platelets down. I then usually have to take a treatment to increase my platelet count.
The incidence of ITP in the U.K. is approximately 6 per 100,000 adults (120 new cases a year) As the incidence is low, medical research on this condition has been extremely limited. The ITP Support Association has been a massive help to me in connecting me with other people with ITP and providing information and support. The Charity also fund their own research into the disease so that they can learn more about ITP and hopefully one day find a cure!Doctors and consultants do everything they can to help you with the management of ITP so it doesn't interfer as much with your daily life. The treatments that are currently available do generally raise your platelets, however, if you stop your treatment your platelets count drops down again. There is no cure!
I did try high dose steroids but side effect are huge and difficult to tolerate my haematologist knows that I will only repeat that treatment if it's a case of life or death.
I found a new way to exercise and 2 years ago i started running twice a week. Painful at first I am now really enjoying it. I will be running Ealing Half Marathon on the 29th of September 2019 for the ITP Support association.
Feel free to take a look at the
ITP Support Association
webpage to get an idea of what they do, then if you are feeling generous, please donate so that I can help them with their much needed funding.Many thanks for taking the time to read this long post and many, many thanks in advance for your donation!!Steph xx


Francais (pas facile d'écrire en francais ):Je cherche à sensibiliser les gens et a collecter des fonds pour une maladie rare dont je suis malheureusement atteint appelée TPI (Thrombocytopénie Immunitaire). Environ 120 personnes sont diagnostiquées chaque année au Royaume-Uni. Je ne suis pas normalement quelqu’un qui mettrait des informations personnelles en ligne, cependant, c’est un sujet qui me tient à cœur et je voudrais faire tout ce que je peux pour aider l’Association “ITP Support Association” afin qu’ils puissent financer plus de recherches sur la maladie. Certains d’entre vous ne savent peut être pas, mais j’ai été diagnostiqué avec une TPI le 14 février 2016 à quelques heures avant de partir pour un voyage au ski que j’ai dû évidemment annuler et échanger pour un séjour à l’hôpital...
Lorsque vous êtes atteint d’une TPI votre système immunitaire détruit vos plaquettes sanguines et donc votre sang risque de ne pas coaguler correctement. Cela peut causer une série de symptômes, y compris des saignements excessifs pour les cas extrêmes. Le plus important est d’éviter de se cogner la tête ou de se couper.Il n’y a pas de test permettant de diagnostiquer une TPI, c’est un diagnostic par élimination donc lorsque toutes les autres maladies qui pourraient expliquer une chute du taux de plaquette sont exclu : ils s’agit d’une TPI
! Ce fut une semaine très intéressante lorsque j’ai dû attendre que les différents résultats de tests sanguins excluant toutes sortes de maladies grave reviennent.
Ce n’est pas héréditaire et ce n’est pas contagieux, et dans mon cas, nous n’avons aucune idée de l’origine de la maladie.
Un niveau de plaquette normal oscille entre 150k-400k, le mien était autour de 19k lorsque j’ai été diagnostiqué et je suis récemment descendu a 17k suite à une infection viral. Après un premier traitement à très haute dose de stéroïdes mon nombre de plaquettes a augmenté légèrement et je suis maintenant stable autour de 30k-40k ce qui signifie que je dois être prudent dans ma vie quotidienne, j’ai dû arrêter mes trajets en vélo pour aller au labo et éviter tous sports de contact ou de skier comme fou.... Bref tous les sports ou je risque de me cogner
! Je me suis mis a courir ...
Tout rhume, virus ou infection va stimuler mon système immunitaire et donc faire descendre mon taux de plaquettes, je dois ensuite prendre un traitement pour augmenter mon taux de plaquette. Je dois aussi être traité si j’ai besoin d’avoir une opération chirurgicale ou aller chez le dentiste. Bref mon hématologue est devenu mon meilleur amis
;)
L’incidence de l’ITP au Royaume-Uni est d’environ 6 par 100 000 adultes (120 nouveaux cas par an... et je fais parti des heureux élus !). L’incidence de la maladie étant faible, la recherche médicale est extrêmement limitée. L’Association «
ITP support association
» m’a été d’une grande aide pour me mettre en contact avec d’autres personnes atteinte de la maladie. En plus de fournir de précieuses informations et de soutenir les patients, l’association finance également leurs propres recherches afin d’en apprendre davantage sur la TPI et, espérons-le, un jour trouver un remède !
Les médecins font ce qu’ils peuvent pour aider les patients, mais une connaissance plus approfondie de la maladie est nécessaire. Il existe des traitements pour faire augmenter le taux de plaquette cependant la plupart présentent des effets secondaires contraignant et l’arrêt du traitement induira la chute des plaquettes immédiatement.Il n’y a pour l’instant pas de remède definitif !
Je me suis donc mis à courir il y a 2 ans !! Là au moins je ne risque rien... Ça a été douloureux au début, mais maintenant ça va mieux et je cours 1 à 2 fois par semaine. Je vais participer au demi marathon de Ealing le 26 septembre 2019. Je vais le courir pour la «
ITP support association
» et pour récolter des fonds.
Si vous vous sentez généreux, vous pouvez faire un don pour l’association afin que je puisse les aider à financer leurs recherches. Les dons se font via un site agrée «
Wonderful
» sur lequel j'ai cree cette page. Ils reversent ensuite l’argent directement à l’association.

Merci pour avoir pris le temps de lire ce long message et merci d'avance pour vos dons !Stephane. xx

Stephane Mouilleron

  • Health
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