Stephane is fundraising

Stephane is running Ealing Half Marathon for The ITP Support Association

£250.00 + £30.00 Gift Aid = £280.00
Donated to Stephane’s £400.00 Goal
12
Sponsors

Stephane’s story

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


All funds raised will be passed to the charity irrespective of whether my target is reached, not reached or exceeded.


Updates


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.

Registered Charity Number: 1064480.

Find out more about The ITP Support Association

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