Rare disease: letting go of guidelines and still wearing a mask

So today in the Netherlands a lot of the guidelines about covid have been let go, like the social distance one. I must say I find it a bit scary but I mean I get it, that also mainly has to do with my situation, my health, my family’s health. But that is why especially on a day like today I wanted to share something. Some of you already know me, a lot of you probably won’t. 

So hi there, I am Poppy, I am chronically ill, I am fully vaccinated, I still keep my distance and I still wear a mask.  when I do need to come in contact with people. Just bear with me a second on why I am writing this and why I think it is important. I have been thinking about writing this post for the past couple of two weeks. I didn’t want to write it at first because I thought it might seem annoyed or something. But I have been thinking and I think it could help some people see some things from a different perspective. 

So this was the case: as some of you may know I am chronically ill with a rare disease. Therefore I have been very careful these past 1,5 years. I have been living a very isolated life, which I am no stranger to but you can read that in another blog post of mine. Even before all this I mostly had my groceries delivered at home. Ever since the pandemic hit the globe I have been careful, no close contact, have been using a mask and asking the deliverance to place the groceries by the door etcetera. I am always a bit down the hall, with a mask and I have the door open so I can say hello. Mostly they ask where to put the groceries since most companies didn’t let their employees deliver inside the house anymore due to the pandemic. Or I sometimes ask them to just leave the groceries on the doorstep or just over it. And if someone does want to place the groceries in the house which I get is just a nice gesture or something that is so wired in their system, I just ask them if they would place them on the doorstep or just over the doorstep because that’s just fine. And mostly their response is a bit of relief like they don’t have to carry all those groceries inside or like are you sure and that it is no problem, which still I get is a nice thing. But sometimes, and in these past years with the pandemic, it just only happens a few times, they are just too quick and already inside the house so I have to ask them to please keep their distance and I say that I am fine with it if they put the groceries over the doorstep. And again most of their reactions are like are you sure it is fine, which is just nice. But recently it was a bit different, still, the delivery person was super nice and just helpful and my guess is it is just a bit different now that most of us are vaccinated and we already knew about the upcoming changes to the policies and guidelines. So this time the delivery person was too quick, already in the house, so I backed up a bit and asked them to place the groceries just there over the doorstep. Since he took another step I said I liked it if we kept our distances. He was kind and laughed it off a bit but then he said a bit condescending and laughing well then I know for sure you are not vaccinated… Like uhm Oke… so I told him with a bit of an annoyed tone well yes I am fully vaccinated, which he again laughed a bit too, and I replied that I am but I still need to be careful because I am very sick. To which he was like oh oh like so. And seriously I get that some might be confused or maybe even like you don’t have the covid or anything right?! And I am fine I someone would just ask. I just say it like it is like that I am fully vaccinated but I am chronically Ill so I have to be extra careful. 

The reason I made this post is that even after today a day where most guidelines have ended I still will be social distancing, still be wearing a mask if I feel I need to, in a public place, at the doctor's, getting my groceries, opening my front door, etc. I really hoped that at the beginning of this pandemic people would start to see things more from a different perspective and have more understanding for people who are (chronically ill) or have disabilities. And that is why I wrote this post to let people see a different side. I do hope people will start to think more inclusive because if people who now feel like an outsider because they have to show a corona app to go to the theater, out to dinner, have lunch with friends. I ask them to try see from a different perspective because we have always been the outsiders even long before this global pandemic hit the globe things weren't inclusive for people with (chronic) illnesses and disabilities. Just imagine how they felt these past years. Loads of their worlds have become so small you can't even imagine and now because some feel they are left ut because they need a pass or an app or such to go places, they are creating a bigger gap again to those who have already been left out.

I could make an even larger post but I just wanted to give my experience as an example as to why some would still wear a mask or still keep their distance and why this would be greatly appreciated if that where to be respected. 

Rare Disesae: Happy rare disease day!

It might seem weird to wish someone a happy rare disease day but I am chronically ill with a rare disease. And that is why I know how important it is to create awareness for all kinds of (rare) diseases and chronic illnesses.

 

I have been chronically ill with a rare disease for over 10 years, I am 1 in a 1.000.000 and I have CAPS disease. 

 

In the past recent months I have started to share more about myself, about my rare disease but never wrote down the words I have CAPS and in honour of rare disease day 2021, I felt it was time to just do so. CAPS is short for Cryopyrin-associated periodic syndrome which is an overarching name for multiple diseases. I'll probably write another blog about what CAPS is and all soon but for now, it is enough. I just know that it can be very difficult when you have are rare disease to find like-minded people and therefore I wanted to just put it out there and to let you, someone know that if you are that person with a rare disease; 

 

You are not alone, together we are many.

x Poppy

 

 

Happy Rare Disease Day!

As the title may already have given it away; today is international rare disease day. That is no coincidence of course with it today being February 29. And because of it, I wanted to help raise awareness of why it is important to have a day like today which asks for awareness of rare diseases and conditions plus also to share a little of my story and why this issue hits close to home.

Well, I have a rare disease and have been struggling with it mentally and physically since I have gotten sick 12 years ago, at age 20. In my case, only 1 in 1.000.000 people are affected by the disease and because mine is familial it's even rarer, even fewer people have what I have. I never like to talk about me being sick not even to my close friends and family. And that is actually the reason I started Poppy Makes.

I wanted a place where no one would see me as the sick girl and a place where I could feel more like the "old me". And because it has always been about what I make or bake, I never felt the need to share that part of my life. But in time I have learned that it is so important to speak about it to your loved ones. So it becomes the new normal, I mean define normal but you get where I'm going with this, normal for you so you won't feel the odd one out. And although I think it will always be a process and to learn to deal with all that comes along, I am at a point in life where I would like to share more about me in the hope that others might not feel so alone.

But what is a rare disease and how is a rare disease or condition defined? Although, I am not the person to come up with statistics because statistics don’t say anything about the individual. But that being said and to give you more of an idea. By European standards, a disease or condition is found rare when fewer than 1 in 2.000 people are affected. In the United States, it is considered rare when a disease or condition affects fewer than 200.000 people or 1 in 1.500. In Japan, a disease or condition is found rare when fewer than 50.000 people or 1 in 2.500 are affected. In medical literature it various how they define when a disease is rare from 1 in 1.000 to 1 in 200.000. But just because a disease is rare doesn't mean you may not know someone with a rare disease because there are about 5000-7000 rare diseases known to mankind today. And the estimation is there are 300.000.000 people affected by a rare disease or condition. Because diseases are rare it is also more difficult to research and to develop the right medicine and/or treatment just because there is a lack of market large enough to gain support and resources for discovering the right medicine and/or treatment.

So to give you an example and idea of a rare disease; you may have heard of ALS which got more publicity over the last few years. Just to be clear I myself do not have ALS I only took this as an example of what it means for a rare disease to get more awareness. So as I said you may have heard the disease ALS, it even went viral in the summer of 2014 because of the Ice Bucket Challenge. It has been estimated that there are about 16.000 ALS patients in America at any given time, although that of course fluctuates. ALS is one of the many rare diseases that exist and probably most of the rest of the rare diseases or conditions you and I have never heard of. That is why it is important to have days like these and get more publicity about rare diseases and conditions in general. Because diseases and conditions are rare so is the information, education, support, treatment, medication, understanding. And although maybe not everyone who participated in the Ice Bucket Challenge did make a donation the estimate says every 1 in 6 did. And because of that a $115.000.000 were raised in 2014 and since The ALS Association has been able to commit $131.000.000 towards their mission, including over $89.000.000 specific to global research collaborations. So my point being is it; that it is so important to raise awareness for rare diseases and/or conditions because although it may not affect a lot of people, many are affected by it. And more awareness does make a difference.

So you may ask yourself, I could have just googled most of it, right?! Uhm yes and yes I did as well, duh. But you may not have googled it yourself if you weren't told that today is international rare disease day and I thought this would be the perfect opportunity to tell you a little more about myself. So I guess I just wanted to share this a bit with you and if you want to see what you can do near your hometown there are all kinds of events worldwide which you can find on raredisease.org or maybe you know someone with a rare disease or condition you might want to read more into that. You could of course just ask them about it (depending on your relationship to the person and the person itself I guess) or google it beforehand make them feel understood and not alone. Or google rare disease and/or condition and find something you want to invest a little of your time in. I mean there are a million things you can do to contribute and create awareness. You don't have to do something big to make an impact. And even that you have just read this and may have learned a little something which makes you understand rare diseases and conditions a bit more, is a win.

A disease can make you feel very lonely even with all the love and support from your loved ones because, in the end, no one really wants to be the odd one out. That is why I wanted to start to share a little bit of my story so even if maybe you are the only person that reads this I want to say:

you are not alone!

love Poppy

sources: 
https://en.wikipedia.org/wiki/Rare_disease
https://www.rarediseaseday.org
http://www.alsa.org/

*Disclaimer: I have gathered this information from the various website as shown above and from my own experience. I do not have any medical knowledge as in I am not trained in the medical field. I have taken Rare Disease Day as an inspiration to write this blog. It is just a view of my experiences and to create awareness for rare diseases and conditions. With these provisos, I have written this blog,