February is Rare Disease Month so it's only appropriate that I do a post about it! š¬ ITP is in fact, a rare disease after all! If you aren't familiar with ITP, I will get into that later.
ā¼ļøFor now, let me drop some facts about Rare Disease Month:
- It was set for February because February has a "rare" amount of days
- Over 300 million people world wide, have a rare disease
- That means 1 in every 20 people have a rare disease
- There are over 7,000 rare diseases
- A rare disease is defined by affecting less than 1 in 20,000 people
- 1 in 10 people suffer from a rare disease here in America
- Half of these rare disease don't have any research being done on them
- 95% of these rare diseases lack an FDA approved treatment
- Majority of rare diseases don't have a known cure
- Those with a rare disease often struggle finding a physician that is knowledgeable about their disease
- Treatments tend to be extremely expensive, many which are not covered on insurance
- Many rare diseases are genetic (mine is not though)
- The financial burden that comes with a rare disease isn't often talked about
So crazy, right?! š³ For me, things set in a little more when you see actual numbers. When you see how many people are living with a rare disease, how many people are struggling almost daily, how many people have to go untreated, how many people that don't have support, how many people that don't have answers... so many people! š©š»š±š¼āāļøš§š»š§š¼š§šæš©š½āš¦±šØš¼ā
With that being said, welcome to my blog, where I share about MY rare disease šš»āāļø In November of 2019, I was diagnosed with a rare blood disease called Immune Thrombocytopenia (say that five times fast), for short, ITP. To be honest, it took me a year to even learn how to say the damn disease correctly LOL šš¤·š»āāļø I'll tell ya, I don't know anyone that has felt comfortable or secure, after hearing their doctor say they have a RARE disease. In my mind, I was thinking... rare? Like, not many people have this? Why is it rare? Where did it come from? Why don't we know what caused it? How is this going to change my life? What is this going to cost me? What do you mean there's no cure? I mean... excuse me, what!? I had never ever heard of ITP, not one single time. Interestingly enough, a lot of doctors have HEARD of ITP but not many have actually had to treat it. Super comforting, right?! š„ŗ
ā¼ļøBrief ITP facts:
- ITP is an autoimmune platelet disorder (immune system attacks your platelets thinking they are bad guys)
- Platelets are the part of the blood that allow clotting, ITP means your blood doesn't clot (you need blood to clot so you don't die! Sorry, I know that's a bit dramatic LOL)
- ITP is more common in children than adults (children can often out grow it as well)
- Doctor's do not know what causes it, nor do they have a cure for it (a lot of research IS being done these days)
- 3 per 100,000 adults are diagnosed with ITP each year in the United States
- One dose of an IVIG treatment can cost as much as a new car (many treatment options are very pricey) š³
Kind of wild, right?!
Now, whether you have ITP or one of the other 7,000 rare diseases out there, I'm willing to bet we have experienced some similarities. In my opinion, it doesn't matter if you're newly diagnosed or have been living with your disease for many years... it can be scary AF! Those with a rare disease have often felt:
- Scared of the future (sometimes scared of the present)
- Unsure how to talk about it with others in their life
- Have had to make life changes due to their illness
- Confused that doctor's can't figure it out
- Stressed about how they'll pay for it; hospital stays, treatments, doctor visits, etc.
- Worried that you'll never get better (yenno, because no cure)
- Annoyed at people that think diet and exercise fixes everything
- Have endured a large amount of unsolicited advice
- Terrified they may lose their job
- Frustrated when you can no longer do some of the things you could before your diagnosis
These are just a few things... every individual is different. There is not one story or situation that is the same. Having a rare disease affects many people in many different ways. Just because I have ITP and maybe you do too... doesn't mean our bodies react the same. Sure, they have some common symptoms that can point in the direction of ITP; random bruising, blisters in the mouth, heavy menstrual cycles, fatigue, petechiae, frequent bloody noses, etc. However, you, me, or the other guy all go through it differently. Different in the way our bodies respond, different in the way it impacts our mental state, different in the way we talk about it.
š£ SO LET'S TALK ABOUT IT š£
February is all about creating awareness around the many diseases that people suffer from. I say suffer because it's not fun. There are good days and bad days, hell some good years and some bad years. Many of these rare diseases are also considered "invisible illnesses", because they don't often present a physical change that is visible to the human eye (this will actually be a topic for later discussion). While we try to create awareness around rare diseases, it pushes us to talk more about it. We try to normalize our disease. People usually don't know what to say when you tell them you have a rare disease. I didn't know anything about ITP and I know for a fact, 98% of the people in my life had never heard of it either. Knowledge is power my friends and educating those around me has been a HUGE part of my journey. When I meet a fellow ITP Warrior, I like to say - welcome to the cool kids club. Only the super unique get in ššš
Over time, I've learned how to make a heavy situation, a bit lighter. Sometimes it is through dark humor but I try to laugh more than cry š¤Ŗš¤ Also, just because I can make light of it, doesn't mean it isn't heavy to carry. No matter how many bad jokes I tell about my rare blood disease, it's still there... and it did in fact, change my life forever.
So whether it be just in February or any other day... let's talk about our rare diseases. Let's support one another on this unpredictable journey. I encourage you to talk to people around you, help them get comfortable with the fact that you are different. Express yourself and give yourself some grace as well. Navigating a rare disease is hard, scary, uneasy, frustrating, annoying, stressful and all the feels! Try to lean on other rare disease warriors, we are all in this together at the end of the day. Together, we can create awareness. Together we can educate others. Together we can advocate. Remember, we are stronger together! Stay hopeful my little rare disease warriors... you've totally got this.
"Alone we are rare... together, we are strong"
Additional Information:
24 Things People With A Rare Disease Wish Others Understood:
Rare Disease Day 2023
Rare Disease Day February 28, 2023
Rare Disease Day
NORD National Organization for Rare Disease (United States Partner)
EURORDIS (Rare Diseases Europe)
Rare Diseases International
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