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Just Diagnosed With A Rare Disease? Here’s A List Of What To Do Now

So you’ve just been told you have a rare disease. Feeling overwhelmed? That’s okay and honestly, expected when it comes to being diagnosed with any condition – especially one that is rare.

When it comes to rare diseases, information on them, how to properly treat or manage them and what the outlook is can be really hard to know even for the specialists in the field. Which makes this new diagnosis feel even more overwhelming.

We know, we have been there. 

Don’t worry though, even though your condition may be rare, the amount of people living with rare conditions is more than you would think. There is an estimated 25 million people in the U.S. living with a rare disease currently and there are more than 6,000 rare diseases out there that are currently known. 

The key is getting plugged in and connected to specialists, support groups, research, other patients and supportive organizations so that you can learn how to best navigate this new diagnosis.

Below are some tips as to what to do now that you’ve been diagnosed with a rare disease that we hope will help you feel more prepared to take it on!

1 – Take Someone With You To Your Appointments

This is good advice for anyone with a chronic medical condition, but is especially true for those with a diagnosed (or suspected) rare disease! This is because rare disease patients will have to rely on their specialist for the latest research and info on the disease since they are usually the ones doing the research on it (maybe even before findings are officially published). 

Having someone accompany you is super helpful as they will be able to help you take notes, support them & help them make experimental treatment decisions that alone would be very overwhelming.

2 – Find The Right Specialist And/Or Team Of Specialists

This team you put together will be the main people that you interact with in terms of your health and the ones you can count on to understand and help you navigate your disease. 

It’s extremely important for you to determine who your team is (even more so than someone with a non-rare condition)  because with a rare disease, normal physicians and specialists may not know anything about your disease. You want to know that when you need it, you have people to fall back on that can actually help you. It is so incredibly vital that you have this team of qualified professionals educated on your disease as available & accessible professionals on your medical team.

3 – Learn About & Research Your Disease

Unlike non-rare disease patients, you don’t have the luxury of medical professionals knowing about or understanding your disease. 

In many instances, you will be the one educating these professionals and having to advocate for yourself and for proper care with regard to your specific disease. This makes it even more important for you to know the ins and outs of your condition so you can do this as best as you can and get the care you deserve.

4 – Choose Your Resources Wisely

Since your condition is rare, the research you will find will be minimal and some of it pretty raw. This makes it harder to understand and pull from. Due to this, you may have to take some time to learn the “language” or medical jargon used so you can best understand and apply the latest research to your case. 

While doing this, you need to make sure that you are getting your research from a reliable and reputable sources such as research studies, clinical trials and qualified medical professionals. 

5 – Connect With Other Patients With Rare Diseases / Your Specific Condition

It can feel really lonely having a rare disease and you can easily feel misunderstood by others. It’s hard for people to truly understand what you are going through if they have never been through it themselves. 

It’s super important to connect to a community of people with the same disease or general rare diseases so that you have a group of people to go to ask for advice, share experiences and feel understood with. This could potentially be something like joining an online or an in-person group. 

6 – Connect /Volunteer For The Awareness Group For Your Disease

Most diseases have an awareness group that helps to spread awareness, educate others and raise funds for research of their condition. 

Try to connect and/or volunteer with this group! Feeling connected to the movement will help to give you hope and a purpose in having this condition. It will help you to feel you can make a tangible difference for others going through the same as you and help you feel supported by others as well. A win-win for all!

7 – Consider Therapy

Being a rare disease patient is a lot emotionally, physically and mentally. Having to navigate the medical system while the professionals themselves don’t really know what they are doing too can be traumatizing. 

You may spend a lot of time in the hospital being misunderstood by the professionals. Then the rest of the time outside the hospital, you may be misunderstood by friends, family and society as a whole. Dealing with all this while navigating a rare disease with experimental treatments and little research can be a lot to deal with. 

We recommend considering therapy as a way to help you cope with these situations past, current and future. There are many types of therapists you could pick from. We recommend trying to connect with one that specializes in helping those dealing with chronic conditions. Need help finding one? No problem! Check out the database you can find on our page here!

8 – Have Hope

This is so so so important. Don’t lose hope. Don’t give up. Having a rare disease can be scary and difficult. It leaves the future very much unknown andit can be a lot to cope wit. 

Don’t lose hope though. There is always hope for a cure. Always hope to heal. Always hope you will find the beauty in what feels like a mess. There’s hope. There’s hope. There’s hope. 

We just encourage you to cling to it.

Conclusion

We know that getting diagnosed with a rare disease is, well, a lot. We hope though that this list and this community are a place where you are able to find support and comfort as you navigate this new diagnosis. 

WELCOME TO

The Chronic Collective

We are an awareness-based clothing brand on a mission to support those with chronic conditions through our clothing, community and actions as a company. Founded by someone with a chronic condition for those with chronic conditions – we hope that what we do, create & offer here provides you with love & support on your journey!

Want To Get Access To Our Free 200+ Chronic Condition Resource Guide?!

Sign up for our newsletter and get the FREE 200+ Chronic Condition Resource Guide, special deals, and notified of new designs and ways you can get involved in our community! 

Popular Posts

Tips For Maintaining A Relationship With Others While Managing Your Condition

Things To Do Before Your Doctor Appointment

7 Ways You Can Support Your Friend With A Chronic Condition

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Get Our Giftcard!

Share Your Story

Join The Support Group & Attend Monthly Events

Podcast Collab

Be An Ambassador

Just Diagnosed With A Rare Disease? Here’s A List Of What To Do Now

So you’ve just been told you have a rare disease. Feeling overwhelmed? That’s okay and honestly, expected when it comes to being diagnosed with any condition – especially one that is rare.

When it comes to rare diseases, information on them, how to properly treat or manage them and what the outlook is can be really hard to know even for the specialists in the field. Which makes this new diagnosis feel even more overwhelming.

We know, we have been there. 

Don’t worry though, even though your condition may be rare, the amount of people living with rare conditions is more than you would think. There is an estimated 25 million people in the U.S. living with a rare disease currently and there are more than 6,000 rare diseases out there that are currently known. 

The key is getting plugged in and connected to specialists, support groups, research, other patients and supportive organizations so that you can learn how to best navigate this new diagnosis.

Below are some tips as to what to do now that you’ve been diagnosed with a rare disease that we hope will help you feel more prepared to take it on!

1 – Take Someone With You To Your Appointments

This is good advice for anyone with a chronic medical condition, but is especially true for those with a diagnosed (or suspected) rare disease! This is because rare disease patients will have to rely on their specialist for the latest research and info on the disease since they are usually the ones doing the research on it (maybe even before findings are officially published). 

Having someone accompany you is super helpful as they will be able to help you take notes, support them & help them make experimental treatment decisions that alone would be very overwhelming.

2 – Find The Right Specialist And/Or Team Of Specialists

This team you put together will be the main people that you interact with in terms of your health and the ones you can count on to understand and help you navigate your disease. 

It’s extremely important for you to determine who your team is (even more so than someone with a non-rare condition)  because with a rare disease, normal physicians and specialists may not know anything about your disease. You want to know that when you need it, you have people to fall back on that can actually help you. It is so incredibly vital that you have this team of qualified professionals educated on your disease as available & accessible professionals on your medical team.

3 – Learn About & Research Your Disease

Unlike non-rare disease patients, you don’t have the luxury of medical professionals knowing about or understanding your disease. 

In many instances, you will be the one educating these professionals and having to advocate for yourself and for proper care with regard to your specific disease. This makes it even more important for you to know the ins and outs of your condition so you can do this as best as you can and get the care you deserve.

4 – Choose Your Resources Wisely

Since your condition is rare, the research you will find will be minimal and some of it pretty raw. This makes it harder to understand and pull from. Due to this, you may have to take some time to learn the “language” or medical jargon used so you can best understand and apply the latest research to your case. 

While doing this, you need to make sure that you are getting your research from a reliable and reputable sources such as research studies, clinical trials and qualified medical professionals. 

5 – Connect With Other Patients With Rare Diseases / Your Specific Condition

It can feel really lonely having a rare disease and you can easily feel misunderstood by others. It’s hard for people to truly understand what you are going through if they have never been through it themselves. 

It’s super important to connect to a community of people with the same disease or general rare diseases so that you have a group of people to go to ask for advice, share experiences and feel understood with. This could potentially be something like joining an online or an in-person group. 

6 – Connect /Volunteer For The Awareness Group For Your Disease

Most diseases have an awareness group that helps to spread awareness, educate others and raise funds for research of their condition. 

Try to connect and/or volunteer with this group! Feeling connected to the movement will help to give you hope and a purpose in having this condition. It will help you to feel you can make a tangible difference for others going through the same as you and help you feel supported by others as well. A win-win for all!

7 – Consider Therapy

Being a rare disease patient is a lot emotionally, physically and mentally. Having to navigate the medical system while the professionals themselves don’t really know what they are doing too can be traumatizing. 

You may spend a lot of time in the hospital being misunderstood by the professionals. Then the rest of the time outside the hospital, you may be misunderstood by friends, family and society as a whole. Dealing with all this while navigating a rare disease with experimental treatments and little research can be a lot to deal with. 

We recommend considering therapy as a way to help you cope with these situations past, current and future. There are many types of therapists you could pick from. We recommend trying to connect with one that specializes in helping those dealing with chronic conditions. Need help finding one? No problem! Check out the database you can find on our page here!

8 – Have Hope

This is so so so important. Don’t lose hope. Don’t give up. Having a rare disease can be scary and difficult. It leaves the future very much unknown andit can be a lot to cope wit. 

Don’t lose hope though. There is always hope for a cure. Always hope to heal. Always hope you will find the beauty in what feels like a mess. There’s hope. There’s hope. There’s hope. 

We just encourage you to cling to it.

Conclusion

We know that getting diagnosed with a rare disease is, well, a lot. We hope though that this list and this community are a place where you are able to find support and comfort as you navigate this new diagnosis. 

WELCOME TO

The Chronic Collective

We are an awareness-based clothing brand on a mission to support those with chronic conditions through our clothing, community and actions as a company. Founded by someone with a chronic condition for those with chronic conditions – we hope that what we do, create & offer here provides you with love & support on your journey!

Want 10% Off?!

Sign up for our newsletter and get 10% off your first purchase, special deals, notified of new designs and ways you can get involved in our community! 

Popular Posts

Tips For Maintaining A Relationship With Others While Managing Your Condition

Things To Do Before Your Doctor Appointment

7 Ways You Can Support Your Friend With A Chronic Condition

Shop

Get Our Giftcard!

Share Your Story

Join The Support Group & Attend Monthly Events

Podcast Collab

Be An Ambassador

Just Diagnosed With A Rare Disease? Here’s A List Of What To Do Now

So you’ve just been told you have a rare disease. Feeling overwhelmed? That’s okay and honestly, expected when it comes to being diagnosed with any condition – especially one that is rare.

When it comes to rare diseases, information on them, how to properly treat or manage them and what the outlook is can be really hard to know even for the specialists in the field. Which makes this new diagnosis feel even more overwhelming.

We know, we have been there. 

Don’t worry though, even though your condition may be rare, the amount of people living with rare conditions is more than you would think. There is an estimated 25 million people in the U.S. living with a rare disease currently and there are more than 6,000 rare diseases out there that are currently known. 

The key is getting plugged in and connected to specialists, support groups, research, other patients and supportive organizations so that you can learn how to best navigate this new diagnosis.

Below are some tips as to what to do now that you’ve been diagnosed with a rare disease that we hope will help you feel more prepared to take it on!

1 – Take Someone With You To Your Appointments

This is good advice for anyone with a chronic medical condition, but is especially true for those with a diagnosed (or suspected) rare disease! This is because rare disease patients will have to rely on their specialist for the latest research and info on the disease since they are usually the ones doing the research on it (maybe even before findings are officially published). 

Having someone accompany you is super helpful as they will be able to help you take notes, support them & help them make experimental treatment decisions that alone would be very overwhelming.

2 – Find The Right Specialist And/Or Team Of Specialists

This team you put together will be the main people that you interact with in terms of your health and the ones you can count on to understand and help you navigate your disease. 

It’s extremely important for you to determine who your team is (even more so than someone with a non-rare condition)  because with a rare disease, normal physicians and specialists may not know anything about your disease. You want to know that when you need it, you have people to fall back on that can actually help you. It is so incredibly vital that you have this team of qualified professionals educated on your disease as available & accessible professionals on your medical team.

3 – Learn About & Research Your Disease

Unlike non-rare disease patients, you don’t have the luxury of medical professionals knowing about or understanding your disease. 

In many instances, you will be the one educating these professionals and having to advocate for yourself and for proper care with regard to your specific disease. This makes it even more important for you to know the ins and outs of your condition so you can do this as best as you can and get the care you deserve.

4 – Choose Your Resources Wisely

Since your condition is rare, the research you will find will be minimal and some of it pretty raw. This makes it harder to understand and pull from. Due to this, you may have to take some time to learn the “language” or medical jargon used so you can best understand and apply the latest research to your case. 

While doing this, you need to make sure that you are getting your research from a reliable and reputable sources such as research studies, clinical trials and qualified medical professionals. 

5 – Connect With Other Patients With Rare Diseases / Your Specific Condition

It can feel really lonely having a rare disease and you can easily feel misunderstood by others. It’s hard for people to truly understand what you are going through if they have never been through it themselves. 

It’s super important to connect to a community of people with the same disease or general rare diseases so that you have a group of people to go to ask for advice, share experiences and feel understood with. This could potentially be something like joining an online or an in-person group. 

6 – Connect /Volunteer For The Awareness Group For Your Disease

Most diseases have an awareness group that helps to spread awareness, educate others and raise funds for research of their condition. 

Try to connect and/or volunteer with this group! Feeling connected to the movement will help to give you hope and a purpose in having this condition. It will help you to feel you can make a tangible difference for others going through the same as you and help you feel supported by others as well. A win-win for all!

7 – Consider Therapy

Being a rare disease patient is a lot emotionally, physically and mentally. Having to navigate the medical system while the professionals themselves don’t really know what they are doing too can be traumatizing. 

You may spend a lot of time in the hospital being misunderstood by the professionals. Then the rest of the time outside the hospital, you may be misunderstood by friends, family and society as a whole. Dealing with all this while navigating a rare disease with experimental treatments and little research can be a lot to deal with. 

We recommend considering therapy as a way to help you cope with these situations past, current and future. There are many types of therapists you could pick from. We recommend trying to connect with one that specializes in helping those dealing with chronic conditions. Need help finding one? No problem! Check out the database you can find on our page here!

8 – Have Hope

This is so so so important. Don’t lose hope. Don’t give up. Having a rare disease can be scary and difficult. It leaves the future very much unknown andit can be a lot to cope wit. 

Don’t lose hope though. There is always hope for a cure. Always hope to heal. Always hope you will find the beauty in what feels like a mess. There’s hope. There’s hope. There’s hope. 

We just encourage you to cling to it.

Conclusion

We know that getting diagnosed with a rare disease is, well, a lot. We hope though that this list and this community are a place where you are able to find support and comfort as you navigate this new diagnosis. 

WELCOME TO

The Chronic Collective

We are an awareness-based clothing brand on a mission to support those with chronic conditions through our clothing, community and actions as a company. Founded by someone with a chronic condition for those with chronic conditions – we hope that what we do, create & offer here provides you with love & support on your journey!

Want 10% Off?!

Sign up for our newsletter and get 10% off your first purchase, special deals, notified of new designs and ways you can get involved in our community! 

Popular Posts

Tips For Maintaining A Relationship With Others While Managing Your Condition

Things To Do Before Your Doctor Appointment

7 Ways You Can Support Your Friend With A Chronic Condition

Shop

Get Our Giftcard!

Share Your Story

Join The Support Group & Attend Monthly Events

Podcast Collab

Be An Ambassador

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    Hey Warrior!

    Want our 200+ Chronic Condition Resource Guide For Free?

    Sign up for immediate access to our resource guide with 200+ links to a variety of resources AND also access to our newsletter where you will get exclusive sales, discounts, and the the latest on The Chronic Collective’s clothing and community!