8

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

See some advice from people with experience in Sarcoidosis to people who have just been diagnosed with Sarcoidosis

Sarcoidosis advice

Advice for Someone Diagnosed with Sarcoidosis


Receiving a diagnosis of sarcoidosis can be overwhelming and raise numerous questions about your health and future. It is important to remember that you are not alone in this journey. Here are some key pieces of advice to help you navigate life with sarcoidosis:




  1. Seek Knowledge and Understanding: Educate yourself about sarcoidosis to gain a better understanding of the condition. Learn about its causes, symptoms, and available treatment options. Reliable sources such as medical websites, books, and support groups can provide valuable information.


  2. Build a Support Network: Reach out to friends, family, and support groups to create a network of individuals who can offer emotional support and understanding. Connecting with others who have experienced or are currently living with sarcoidosis can provide a sense of community and valuable insights.


  3. Communicate with Your Healthcare Team: Establish open and honest communication with your healthcare providers. Ask questions, express concerns, and actively participate in your treatment decisions. Regularly update your doctors about any changes in your symptoms or overall health.


  4. Follow Your Treatment Plan: Adhere to the treatment plan prescribed by your healthcare team. This may include medications, lifestyle modifications, and regular check-ups. Consistency and compliance with your treatment plan can help manage symptoms and prevent complications.


  5. Manage Your Symptoms: Sarcoidosis symptoms can vary widely from person to person. Work closely with your healthcare team to develop strategies for managing your specific symptoms. This may involve medications to alleviate pain, inflammation, or other symptoms, as well as lifestyle changes such as a healthy diet, regular exercise, and stress reduction techniques.


  6. Monitor Your Health: Keep track of your symptoms, their severity, and any changes you notice. Maintain a symptom diary or use a mobile app to record your experiences. This information can help you and your healthcare team identify patterns, triggers, or improvements in your condition.


  7. Take Care of Your Emotional Well-being: Dealing with a chronic condition like sarcoidosis can take a toll on your mental health. It is essential to prioritize self-care and seek support when needed. Engage in activities that bring you joy, practice relaxation techniques, and consider therapy or counseling to address any emotional challenges you may face.


  8. Make Lifestyle Adjustments: Certain lifestyle changes can positively impact your overall well-being. Quitting smoking, maintaining a healthy weight, and avoiding exposure to environmental toxins can help manage sarcoidosis symptoms and reduce the risk of complications.


  9. Stay Informed about Research and Clinical Trials: Stay updated on the latest advancements in sarcoidosis research and clinical trials. New treatments and therapies are continually being developed, and participating in clinical trials may provide access to innovative options.


  10. Advocate for Yourself: Be your own advocate and actively participate in your healthcare decisions. Stay informed, ask questions, and voice your concerns. Remember that you have the right to seek a second opinion or explore alternative treatment options if needed.



Remember, sarcoidosis is a chronic condition, but with proper management and support, many individuals lead fulfilling lives. Surround yourself with a strong support system, stay informed, and take an active role in your healthcare. By doing so, you can navigate the challenges of sarcoidosis while maintaining your overall well-being.


Diseasemaps
24 answers
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.

Posted Apr 18, 2017 by Curt Hodapp 1150
Take it a day at a time and ask questions!!!

Posted Apr 19, 2017 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.

Posted Apr 19, 2017 by Poliseno 1000
don't ever give up no matter what

Posted May 9, 2017 by Michael 1150
Love life...do what you supposed to do making every second count ...you can beat this

Posted May 31, 2017 by Salosh 3601
There is hope. There are medications to help you through the symptoms. Its not a death sentence.

Posted Sep 7, 2017 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

Posted Sep 11, 2017 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

Posted Oct 26, 2017 by Diane 2735
Don't panic! Research on line and join a group/forum. Not all doctors are up to speed on Sarcoidosis.

Posted Oct 27, 2017 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

Posted Oct 27, 2017 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

Posted Oct 27, 2017 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!

Posted Oct 27, 2017 by Sandra 1200
Don’t panic. Sarcoidosis is like snowflakes each person will have a completely different experience

Posted Oct 28, 2017 by Penny 1200
Get on foundation for sarcoidosis site, join it, then join sarcoidosis Facebook sites.... you are not alone

Posted Jan 11, 2018 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.

Posted Jul 4, 2018 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

Posted Nov 13, 2018 by Wen 2100
Start your txt as soon as possible.

Posted Oct 8, 2019 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.

Posted Mar 8, 2020 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!

Posted Jan 18, 2021 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

Posted Feb 13, 2021 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 [email protected] . I can breath much better and It feels comfortable!

Posted Apr 5, 2021 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.

Posted Sep 14, 2023 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.

Posted Sep 8, 2017 by Ramzi 1000

Sarcoidosis advice

Sarcoidosis life expectancy

What is the life expectancy of someone with Sarcoidosis?

25 answers
Celebrities with Sarcoidosis

Celebrities with Sarcoidosis

9 answers
Is Sarcoidosis hereditary?

Is Sarcoidosis hereditary?

23 answers
Is Sarcoidosis contagious?

Is Sarcoidosis contagious?

22 answers
Natural treatment of Sarcoidosis

Is there any natural treatment for Sarcoidosis?

18 answers
ICD9 and ICD10 codes of Sarcoidosis

ICD10 code of Sarcoidosis and ICD9 code

15 answers
Living with Sarcoidosis

Living with Sarcoidosis. How to live with Sarcoidosis?

24 answers
Sarcoidosis diet

Sarcoidosis diet. Is there a diet which improves the quality of life of peo...

27 answers

World map of Sarcoidosis

Find people with Sarcoidosis through the map. Connect with them and share experiences. Join the Sarcoidosis community.

Stories of Sarcoidosis

SARCOIDOSIS STORIES
Sarcoidosis stories
My story continues and I wonder how and why I go through what I do... Then there is that one person that calls me or sees me and either thanks me or just gives me that Hug that just means I am doing something right!!! I have been going through some r...
Sarcoidosis stories
Who I'm I- My name is Madeline, 50yrs old, born in NY raised in Puerto Rico. Living in Massachusetts. Single mom of two amazing son's, a 30 yr old and a 23 yr old US Marine. My illnesses are-Cancer survivor, Hodgkins Lymphoma diagnosed in 1992 while...
Sarcoidosis stories
My name is Barbara Weber and I suffer from this disease called Sarcoidosis. It affects your body’s organs for example skin, heart, kidneys, but mainly the lungs. In people who have Sarcoidosis, the inflammation doesn't go away. Instead, some of the...
Sarcoidosis stories
My dr diagnosed me with COPD in 2013 but my cough was dry and breathing treatments weren't helping much.  She did blood work and said I needed vitamin d. So I began taking it and a lump came up on my wrist and kept growing.  She referred me to s su...
Sarcoidosis stories
_I WAS DXD AFTER I HAD A BAD TICKLE IN MY THROAT THAT WOULDN'T GO AWAY, I COUGHED SO MUCH THAT I CRACKED A RIB THAT LEAD TO SHINGLES, I THOUGHT I HAD PNEUMONIA & WENT TO SEE MY PCP, HE ORDERED A CHEST X-RAY WHICH SHOWED THE GRANDULOMAS, THE DR ASSIST...

Tell your story and help others

Tell my story

Sarcoidosis forum

SARCOIDOSIS FORUM
Sarcoidosis forum
#Teamandreafight will be hosting a sarcoidosis awareness Day. April 30,2016. Games. Raffles. Guest speakers. Holistic remedies. We're even selling inflammation reducing lemonade! Bake sale and more. JOIN US!! Survivors please visit our facebook page ...
Sarcoidosis forum
I am looking for other with Neurosarcoidosis, my Dr.s have all told me its a rare type of Sarcoidosis and my also being a white male Im very more a rare bird, are there any others, I am also open to talk to anyone

Ask a question and get answers from other users.

Ask a question

Find your symptoms soulmates

From now on you can add your symptoms in diseasemaps and find your symptoms soulmates. Symptoms soulmates are people with similar symptoms to you.

Symptoms soulmates

Add your symptoms and discover your soulmates map

Soulmates map