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Which advice would you give to someone who has just been diagnosed with Scleroderma?
See some advice from people with experience in Scleroderma to people who have just been diagnosed with Scleroderma
Dont loose hope, there will be many bad days but the key to fight this disease is to tell that you're strong that it is
Posted Apr 1, 2017 by Fashah 1150
Not easy. Not two people are affected in the same way. Don't compare yourself to another patient and listen to your body. If you are tired, go take a nap. I searched the internet and became very scared. It isnit always the best to see how it can affect your body.
Posted Apr 1, 2017 by Milda 1000
The most important thing that anyone diagnosed with systemic scleroderma can do is to work with a clinician who is a disease expert if at all possible. A typical rheumatologist sees only a few scleroderma patients in their entire career and as a result is not up to date on diagnosis and treatments.
Patients should also educate themselves from reliable sites such as the Scleroderma Foundation (slceroderma.org), the Scleroderma Education Project (SclerodermaInfo.org), the Mayo Clinic, and Johns Hopkins. As a general rule, they should avoid any sites that end with ".com" as they are usually sites that are trying to sell you something based on testimonials, but have little or no research support for whatever it is they are trying to sell you.
Patients should also educate themselves from reliable sites such as the Scleroderma Foundation (slceroderma.org), the Scleroderma Education Project (SclerodermaInfo.org), the Mayo Clinic, and Johns Hopkins. As a general rule, they should avoid any sites that end with ".com" as they are usually sites that are trying to sell you something based on testimonials, but have little or no research support for whatever it is they are trying to sell you.
Posted Apr 4, 2017 by Choclit 1150
Try to do your research find the best doctors close to you or even if you have to travel! It’s important to be your own advocate and be in control of your health and the ppl taking care of it! I know it can be frustrating and scary but your not alone find your support system in whatever form that is. Whether it’s family or online or an in person group! Try to stay positive and do not be afraid to ask questions!! It’s your body and your in charge of it!
Posted Mar 30, 2018 by Amy 2600
Look at what you are able to do with Scleroderma. Make a list and if there are things on the list that you cannot do....make it a goal to find strategies to make it happen or its alternatives. Learn as much as you can and be an advocate. Life is not over with Scleroderma. It is, rather, a beginning, of an alternative way of finding solutions.
Posted Nov 21, 2018 by Juanita 1900
Translated from spanish
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Patience the first few years are the hardest
Translated from spanish
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be positive that your situation is unique, that if it is systemic must be getting used to some changes, both physical and psychic...that you follow the instructions of your doctor, and seek emotional support to prevent depression
Posted Feb 27, 2017 by cecilia miranda 1000
Translated from spanish
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The same that I gave to my:
"don't worry about the disease, deal with it"
- Avoid the cold
- Avoid stress.
"don't worry about the disease, deal with it"
- Avoid the cold
- Avoid stress.
Posted Mar 21, 2017 by Amparo 1000
Translated from spanish
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Don't let the depression and the fear of the unknown dominate
Posted Mar 23, 2017 by ana h 1400
Translated from spanish
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Acceptance
Patience and a lot of strength to endure the changes that will give your life.
To maintain a specific diet and let food harmful.
Get plenty of rest.
In the case of labor, to take care of the work up to where the body allows it.
Find support on all sides, not only economic, but psychological, sentimental.
Enjoy the 1000 your life.
Patience and a lot of strength to endure the changes that will give your life.
To maintain a specific diet and let food harmful.
Get plenty of rest.
In the case of labor, to take care of the work up to where the body allows it.
Find support on all sides, not only economic, but psychological, sentimental.
Enjoy the 1000 your life.
Posted Apr 28, 2017 by Alma Olivia 1000
Translated from spanish
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That report , which I cried for all I have to cry now , then breathe and get all the power and punch to tackle the disease.....while best attitude and strength you have the easier and bearable is scleroderma. .
And always remember to be a warrior as all the patients of scleroderma ...do not lose never the arms
And always remember to be a warrior as all the patients of scleroderma ...do not lose never the arms
Posted May 11, 2017 by Tatiana 1135
Translated from spanish
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At that time do not know what happens with your body, and the worst thing is to see that even the same doctor does not know that happens to you. But the first thing you should do is to seek help from a Rheumatologist, who is the specialist doctor that can help
Posted May 15, 2017 by Lucero 1050
Translated from spanish
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You try to be quiet, because although it seems that you are falling the world over, everything has its positive part. Learn to see the good side of what is going on and enjoy each day of your life. Understand that ill help you to grow and be a better person.
Posted May 18, 2017 by Montse 1151
Translated from portuguese
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You to stay calm.
The scleroderma has ups and downs.
Are many remedies and the various stages of the disease.
It's no use to despair. The important thing is to aptenser to live with it and how much before you become aware of the limitations that it causes.
The scleroderma has ups and downs.
Are many remedies and the various stages of the disease.
It's no use to despair. The important thing is to aptenser to live with it and how much before you become aware of the limitations that it causes.
Posted Sep 30, 2017 by Carol 1000
