How to Care for Someone With Scleroderma

Just as scleroderma forces the sufferer to dramatically change his or her life to adapt to the limitations of the disease, her loved ones will have to adapt to a new lifestyle. Since scleroderma can attack just about any part of the body, including the brain, it is important to know how to care for someone suffering from scleroderma effectively and with compassion.

Instructions

Difficulty: Challenging

Things You’ll Need:

• Moisturizer
• Blood pressure monitor
• Heat packs for hands and feet
• Car or access to public transit

Take the First Steps

1. Speak with the scleroderma patient's doctor. You may even want to schedule your own appointment with him, away from the patient, to find out what you can do right now to alleviate pain and improve the quality of life of the patient.
2. Ask the patient's doctor for your own list of the patient's medications and dosage. Ensure that the patient takes the medications as prescribed.
3. Help the patient find a counselor. Nearly every medical professional working with scleroderma emphasizes the very real possibility of serious depression. Establish a support contact early. Most hospitals have psychiatrists and other types of counselors on staff.

Assist With Physical Care

4. Help the patient to keep moisturizer on the body, especially the places he or she can't reach. Scleroderma will have unique symptoms for every sufferer, but it nearly always involves skin hardening. This can be alleviated to a certain degree by keeping the skin moist. The patient should be moisturizing after baths and can also put lotion on at night and then cover up with sweats, socks and even cotton gloves to keep the lotion on.
5. Keep the extremities warm. Heat can go a long way toward alleviating pain and irritation in the hands and feet, so heat packs, gloves and the kinds of foot and hand warmers found in ski shops (either battery-operated or the chemical kind that you snap in half to produce heat) can make a big difference.
6. Be kind when caring for your loved one with scleroderma.

Help With Medical Treatment

7. Drive the patient to medical appointments. Since scleroderma symptoms can appear quite suddenly, keeping regular appointments is vital. Someone dealing with this illness may not be able to drive or may be too lethargic to want to keep appointments, so it may be up to you to keep your own calendar of check-ups.
8. Buy a blood pressure cuff (or battery-powered blood pressure monitoring machine) from a local pharmacy. Ask the patient's doctor to show you how to test the blood pressure of someone dealing with scleroderma and to tell you what the ideal pressure should be. If the blood pressure of a scleroderma patient drops too low, it could indicate that urgent care is needed, so keep the doctor's phone number handy.
9. Regularly observe your loved one's well-being.

Tips & Warnings

• Know that scleroderma isn't just a physical condition, but one that affects all of the person. Be prepared to deal with emotional changes as well as physical symptoms.