The Beginners Guide to ITP; What to Do After You Are Diagnosed

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Feature image by CLAUDIABRUNO

ITP or immune thrombocytopenia is classified as an autoimmune disorder.  This is because it is the immune system, either over functioning or faulty in some way, that targets and destroys the platelets in your blood.  ITP is diagnosed by a low platelet count after the exclusion of all other causes for this deficiency.

So you have just been diagnosed with ITP.  Firstly, welcome and don’t worry.  Though it will certainly change your life, having ITP is not going to ruin your entire life.  This article is going to walk you through the first steps you should take after your diagnosis.  It will be easy and you can learn from our mistakes.

1. Start Tracking Your Platelet Count Now

Keeping a close eye on the rise and fall of your platelets is key to removing a lot of the FEAR and worry from ITP.  Over a long period of time, patterns will begin to emerge and you will start to connect platelet drops with other environmental factors.

Begin with your first platelet count and record every platelet count after.  Try to keep detailed notes, including your medication, any illness at the time, moving house, changing jobs, stress levels and anything else that you feel may be significant later.

These records will be handy if you ever need to quickly consult with a different doctor or are away on holiday, but most importantly they will act as your own record to help you understand and predict your illness.  There are a number of great free SMART PHONE APPS specifically designed for ITP patients and can help you track your platelet count.

2. Mark the 26th September in Your Diary

Congratulations, you now have a new public holiday to celebrate!  The 26th of September is International ITP AWARENESS DAY.  Originally held in America, it is fast spreading around the world.  There is no official way to celebrate ITP Awareness day apart from telling all your friends and perhaps having a party.  We suggest making AWARENESS DAY CUPCAKES, for kids to take to school in their lunch box.

There is also an ITP conference held in America every year by the PDSA, the Platelet Disorder Support Association and an ITP conference held in the UK but the ITP SUPPORT ASSOCIATION.  If you’re interested in traveling and meeting more people with ITP, check the out.  Many of the leading haematologists and ITP doctors attend these conferences and present the latest research.

3. Stock the First Aid Kit

Spend some time upgrading your first aid kit.  Cheap plastic, bandaids may have worked for you in the past but now it’s time to upgrade.  Small cuts and abrasions are going to need pressure and strength when it comes to first aid plasters.  Go for tight, fabric, waterproof band-aids to help stop the bleeding faster.

Some people also choose to stock BRUISE CREAMS in their first aid kit.  These creams are great to apply to bruised areas to heal a bruise faster.  Ice packs are also important to have in the freezer at home and in school staff rooms.  For traveling and in the car INSTANT COLD PACKS are great.  They do not need to be kept cold.

4. Buy a Soft Tooth Brush

The best thing you can do for your gums while you have a low platelet count is to buy a soft bristle toothbrush.  BRUSHING YOUR TEETH with a low platelet count usually ends with bleeding gums and a sore mouth.  Also, it is important now to book in for regular dentist visits as you are no longer going to be able to identify the symptoms of gum disease.  Gum disease is normally indicated by bleeding gums and sore mouths, but you will have that all the time now.ips on going to the

Tips on going to the DENTIST with ITP.

5. Find Out Your Blood Type.

In a medical emergency, you will always have your blood cross-matched before you are given any blood product.  This does not mean you do not need to bother learning your own blood type if you don’t already.  You will probably be asked your blood type a lot and will need it for health forms and medical alerts.  It is good to find out as soon as possible.

If you required a platelet or blood transfusion to treat your ITP, consider asking friends or family to DONATE PLATELETS to the red cross or the blood bank to replenish the stock.

6. Talk to Your Friends about ITP 

There is very little known about ITP.  So your friends have probably never heard of ITP before (as perhaps had you)  I would suggest sending this article around to your friends, 10 THINGS NEVER TO SAY TO SOMEONE WITH ITP, before they put their foot in their mouth.  Also here is a great article by a friend of an ITP suffer about how the disorder effects friends and family too, How often should I ask my friend HOW SHE IS DOING?

As an ITP patient, it is important to remember that it is not always about you.  Friends and family will worry whether they tell you this or not.  Talking to friends about ITP will not only help them to understand you, but you can understand them too.

7. Keep Reading about ITP

The information regarding ITP is changing all the time.  Familiarise yourself with the signs and symptoms of a low platelet count by learning more about your autoimmune disorder.  Internet searches will provide a vast amount of information to sift through.  While most of it will be anecdotal, that does not mean it won’t be of interest.

Reading other patients STORIES can help to take the mystery out of ITP.   Consider CONTRIBUTING YOUR OWN STORY to the conversation, anonymously if you wish.

Follow BLOGS ABOUT ITP and connect to ITP groups on Facebook.  Many countries have their own Facebook hosted ITP forums where people are constantly swapping stories, information, articles and details of specialists.  Also, think about following #ITPAWARENESS  on social media such as Instagram and Twitter.

Now Stop… Congratulations.  Now you can relax and stop reading about ITP.

Thriving and managing ITP will mostly come down to your attitude and the relationship you have with your doctor and specialist.  Trust that you know your body well enough and never listen to others who have no idea what they are talking about.

Do you have anything else you think should be on this list.

Share your tips for people who have just been diagnosed with ITP.

Please leave your additions to this list below.  Good Luck

 

by Meg

Meghan Brewster is a writer and blogger. She is an ITP patient and launched ITP&Me in 2011. She is a coffee lover and a try hard dancer. @meghan_brewster

8 thoughts on “The Beginners Guide to ITP; What to Do After You Are Diagnosed

  1. jackydixon@manx.net'
    Jacky Dixon says:

    If you are taking steroids, it is important to have your eyes checked annually, as it can cause glaucoma.

  2. fiona.tamburrini@gmail.com'
    Fiona says:

    I’m just at the start of my journey, I’ve recently been diagnosed with Type 2 Diabetes and have been really lethargic for over a year until I started the meds, but I’m worse than ever now and I even fell asleep in a work meeting this week.so my doctor is looking into my bloods. I’ve been getting my bloods tests weekly (at least) and my platelets and hemoglobin have nosediving swiftly-within a month my platelets went from 140 to 71. The doctor thinks it’s ITP and ive been referred to a haematologist…it’s a waiting game now. This site and the PDSA one are amazing knowledge banks.

  3. melindamcwherter@yahoo.com'
    Melinda says:

    My daughter was diagnosed this year but by checking back medical records, we found she’s had it longer. She’s not a bleeder but does get tired. I’m researching ways to improve her environment to help her in any way I can to get as healthy as possible. I’m glad I found this support page.

  4. duckyday1@hotmail.com'
    Donna Day says:

    Thank you this is great!
    I’ve been dealing with this for a year-trying various mostly lots of vitamins and basically I feel better when my stress level is managed.

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