Patients with atypical hemolytic uremic syndrome (aHUS) and their family members may benefit from paramedical services — those offered by therapists, dieticians, and social workers, among others.
Here is further information on paramedical services and a listing of some which may be of help.
What are paramedical services?
Paramedical services are those that are provided by staff other than doctors, dentists, and nurses. These services focus on improving the quality of life of patients, which in turn may benefit the family and caregivers of those with medical conditions. Paramedical staff are licensed professionals and commonly include support personnel such as therapists, counselors, dieticians, and social workers.
Researchers think that aHUS develops as a result of a combination of genetic and environmental factors. Mutations in at least seven genes have been linked to aHUS. Genetic testing and counseling can help patients investigate what mutation they might have and learn more about their disease.
If you are an aHUS patient or a partner of one, you may want to speak with a genetic counselor before having children. A genetic counselor can inform you of the potential risks of having a child who also has the mutation, as well as what options may be available to lower that risk.
Mental health and family therapy
A chronic illness such as aHUS can lead to stress and depression for both patients and their family members. A study found that 27% of patients whose disease had progressed enough to require dialysis experienced anxiety and depression. Therapy or counseling for patients and their families can help each individual to learn techniques to support one another and also cope with emotions caused by life with aHUS.
If you have aHUS, you need to pay special attention to your diet, especially if you are undergoing dialysis. Consult with a dietician to help you develop a diet plan to ensure you are receiving adequate nutrition.
One in five adults with aHUS experience respiratory symptoms, research has shown. Respiratory therapy can provide strengthening exercises and breathing techniques that can improve the flow of oxygen into and out of your lungs. Such therapists also can manage and teach you how to use respiratory devices such as oxygen tanks and ventilators.
Living with aHUS can lead to many challenges for patients and their families. Social workers can assist you with finding resources about aHUS and adopting healthier lifestyles. They also can help you understand your insurance coverage and find additional financial assistance for treatments and services. Social workers also may be able to help you find support groups that may be helpful.
Last updated: Jan. 25, 2021
aHUS 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 other 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.
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