Which advice would you give to someone who has just been diagnosed with Sarcoidosis?

You are not alone. It is a rare disease; however, with social media it easy to find a support group and you will find that you are not alone. I have found two on Facebook.

4/18/17 by Curt Hodapp 1150

Take it a day at a time and ask questions!!!

4/19/17 by Terika 1000

The most important device is what was given to me, read read read. Read everything you can and learn about sarcoidosis and the effects it has on your body, organs, mind and life. As each person lives with Sarcoidosis differently the more you know and understand your disease the more questions you have for your doctors and the more knowledge you have for yourself as knowledge is power when it comes to sarcoidosis.

4/19/17 by Poliseno 1000

don't ever give up no matter what

5/9/17 by Michael 1150

Love life...do what you supposed to do making every second count ...you can beat this

5/31/17 by Salosh 3601

There is hope. There are medications to help you through the symptoms. Its not a death sentence.

9/7/17 by Kristie 2000

Do Not freak out over the disease that is stress. Learn more and educate yourself about your sarcoidosis problem. Some people only have it in one area of their body. 10% have it everywhere. Can I go all eight organs

9/11/17 by XTIENNA 2000

Try to read as much as you can about the disease and join a support group so that you benefit from the experiences others who have had Sarcoidosis for some time can pass on. Always remember you will never be alone if you do this. There is a lot of conflicting information and you may sometimes find yourself educating members of the medical profession as there are few GP's and doctors who understand the disease. If you are able to get a consultation at either the Royal Free Hospital or the Royal Brompton as these are the best hospitals with experienced doctors for patients with Sarcoidosis in the UK

10/26/17 by Diane 2735

Don't panic! Research on line and join a group/forum. Not all doctors are up to speed on Sarcoidosis.

10/27/17 by KindredSpirit 2050

It is scary to be diagnosed with this illness. Quite often the illness resolves itself within 3 years so monitoring will be performed as long a permanent damage is not being caused to any organ. Although rare there are help groups that can help you get the best services

10/27/17 by Wendy 2000

Ask lots of questions Get a good support network Get plenty of rest Dont be afraid to cry/get angry/sleep when your body telly you Never be afraid to ask for help

10/27/17 by Stewart 2000

Don’t panic! Take your doctors advise. Push to see specialists. It is perfectly possible to live a normal life. Take your meds!

10/27/17 by Sandra 1200

Don’t panic. Sarcoidosis is like snowflakes each person will have a completely different experience

10/28/17 by Penny 1200

Get on foundation for sarcoidosis site, join it, then join sarcoidosis Facebook sites.... you are not alone

1/11/18 by Cathleen 1900

Learn as much as you can. And seek out doctors that have experience with other patients. You will need to be your own advocate. And know that you're not alone there is support and communities out here to answer questions that you have.

7/4/18 by msinky 2550

The advice I would give is do your very best to try and not to elevate your stress levels...Do your best not to worry...High stress levels and worrying can make Sarcoidosis worse in some cases... Take one day at a time, Eat healthy, limit alcohol intake, exercise if you are able.... Educate your family about Sarcoidosis because they are your support system... Quit smoking, I dont believe that you are helping your Sarcoidosis by smoking

11/13/18 by Wen 2100

Start your txt as soon as possible.

10/8/19 by Lashawn 2500

Don't get scared because stress can cause you a flareup. Be your own advocate because if you don't you will not be listen to. Do not be afraid to Speak your mind about how you're feeling. And if you're not getting the answers or the help you require always get a second opinion.

3/8/20 by Elizabeth 4800

Make sure you have a good doctor and do not rely on just a scan, get a biopsy! Once you have confirmed biopsy, make sure you get in with a sarcoidosis specialist. At first, for me, I went to pulmonologist who said I needed no treatment and would be fine. I went 8 months with worsening symptoms and was finally referred to National Jewish Health. There I was set up with a team of Doctors who found out I had Sarcoidosis in multiple organs! As such I needed medications to slow progression. Been on medications for 5 years now!

1/18/21 by Althea 4550

Dont lose your time on the internet, You will be worry for nothing. Each diagnosis is different. Your case is unique. And a lot will have a normal life without a y troubles after a couple of time

2/13/21 by Hélène 1100

I started on COPD Herbal treatment from Ultimate Health Home, the treatment worked incredibly for my lungs condition. I used the herbal treatment for almost 4 months, it reversed my COPD. My severe shortness of breath, dry cough, chest tightness gradually disappeared. Reach Ultimate Health Home via their email at ultimatehealthhome@gmail.com . I can breath much better and It feels comfortable!

4/5/21 by Robert 9039

Your experience with Sarcoidosis is just that yours. Do not compare your symptoms to others. Some may have the same symptoms and others may not. Everyone may not understand what you're going through but you can get your support system together that can help you. Take it day by day.

9/14/23 by Emma Johnson 2500

Translated from french Improve translation

Follow the treatment your specialist and comply with the diet. And finally be optimistic. Because despite the fact that it is a rare disease but we can cure.

9/8/17 by Ramzi. Translated