ITP Immune thrombocytopenia is a very rare auto immune disease that happens to affect 9.5 cases per 100,000 adults. If you have this condition it generally means your immune system is somewhat faulty as it is attacking itself. What it is attacking is your platelets and platelets are the body’s way of clotting ones blood. A healthy individual would have approx. 150,000 – 300,000 platelets however a person with ITP will have much less. The lower the platelets go the more risks there are associated with bleeding. To learn more about platelet counts and bleeding risks check out this blog post.
Ok let’s get to it! So you have just been diagnosed with ITP no need to worry because although this condition can be very overwhelming at first it’s important to know that it is manageable. With slight adjustments and monitoring you can live a happy healthy life with ITP. However let’s get cracking on the first few things you need to do now that you have just been diagnosed.
Join a Tribe – one of the best things you can do is join one of the few Facebook groups for ITP patients (links below) these are great because you can join a community of people just like you. It’s a great place to share stories and information.
Follow some fellow suffers - following others that share their journey with ITP is a great way to better understand this condition and also a way to know that you are not alone. Here are some below favourites;
@i_t_p_warriorjose
@pdsa_itp
@emely_itp_princess
Knowledge is power – What you want to do right now is educate yourself as much as possible in regards to your condition. This not only helps with understanding what is happening in your body but also helps with deciding on treatment methods. Ultimately how you decide to treat your ITP is up to you so although your doctor will offer their professional advice it’s important you know what treatment method you are comfortable with.
Buy a first aid kit – Now I’m not talking about the basic plastic band aids or sterile eye pack. I’m talking about things you may require due to your condition. These items include but are not limited to; bruise cream, thick bandages, blood stoppers, ice packs, tissues (for nose bleeds), thick waterproof band aids and stay clean of any products that are blood thinners.
Know your blood type – in case of an emergency it’s important to know one’s blood type. Whilst the emergency department should be checking your blood type prior to any transfusion it’s still important for you to already be aware of it. It’s also handy if you are aware of any family or friends that have the same blood type as you.
Stay clear from sick people – friends, family and loved ones may want to come visit you to check in and make sure you are ok. This is good because nothing helps more than support however be sure that they do not have a cold, flu, tummy bug or anything that would label them as “sick”. As you will learn catching a simple common cold etc. can cause massive issues with your platelets therefor it is best to stay clear from sick people.
Track your results – tracking your levels is an amazing way to find out if your condition is getting better or worse. It also is great for monitoring to see any familiarities (eg. When you are stressed do your levels plummet etc?) and what treatment works for your body.
Spread Awareness – September is ITP awareness month so make sure you mark your calendar and spread the word. If more people understand this condition the more awareness will be achieved therefor better chances of finding a cure.
Have your hematologist number handy – It’s very important to have a good relationship with your doctor and have their number handy just in case you have concerns (eg. Things like you have red spots all over your legs; your nose has been bleeding for over 20 minutes etc.). Important things that may showcase that you may need another visit not silly questions that can be answered by research or visiting your local GP.
Take precautions – If you play sport it’s important you understand the risks therefor make sure you check with your doctor about what sport you like to play and if it’s appropriate for you to keep playing this sport with your condition.
Well there you have it – if you have ITP and have any further tips for a newly diagnosed ITP patient please comment below.