7 Tips for New Scleroderma Caregivers

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by Wendy Henderson |

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It can be stressful when someone you love is diagnosed with scleroderma–you’ll be concerned and worried, and probably unsure what to do. We’ve compiled a list of useful tips to help you through those first few bewildering weeks so you can offer the best support to your loved one at this difficult time, based on information from Scleroderma Strong.


Do Your Homework

There are different types of scleroderma so it’s important to know all about the specific type your loved one has been diagnosed with. The more information you know about the condition, the more prepared you can be for what’s ahead.

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Keep Track of Medications

Keep a note of all of medications and how they need to be taken (this is particularly important if it’s a child who has been diagnosed with scleroderma). Make sure your loved one always has enough medication and take it with you when you go out together.

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Accompany Them to Appointments

Having a chronic illness is scary and overwhelming, particularly in the early weeks and months. Showing your support by accompanying them to doctors’ appointments will give them comfort. Prepare a list of questions to ask the healthcare providers beforehand and take notes so you can refer to them later.

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Join a Support Group

A support group can offer help and guidance to both you and your loved one. You can share your experiences with other caregivers and develop friendships with people who understand what you’re going through.

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Be Patient and Understanding

Your loved one is going to go through a range of emotions, which can be stressful for the whole family. Give your loved one time and space to adapt to their illness. Facial changes may bring about a lack of confidence and your loved one may not want to socialize as much as they did before. Never try to force them to do something they don’t want to, but encourage them gently to get out and meet people.

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Offer Help but Allow Independence

As the disease progresses your loved one will need more and more help with daily tasks. Provide this help when it’s needed, but don’t assume that they can’t do something for themselves. Your loved one will more than likely want to remain as independent as possible, so ask them what they do need help with and what they can do for themselves.

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Be Inclusive

Don’t assume that because your friend or loved one has scleroderma they won’t want to leave the house. Include them in social plans and remember that they may feel too tired or ill to join in one week but may be feeling OK for a trip out the following week.

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Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.