Support is available for this complex condition.
Living with cystinosis can be difficult and challenging. Support is vital for the patient, caregiver, and family. Remember that although cystinosis is rare, there is a community of specialists, advocates, and other healthcare professionals and organizations that can help you navigate the complexities of this disease.
Treating and managing cystinosis requires the involvement of many different types of healthcare providers. From doctors and nurses, to specialists and support professionals, they are there to guide, treat and help manage the symptoms of cystinosis.
Cystinosis Eye Care Directory
Due to the rarity of cystinosis, there are only a limited number of physicians who treat it. This directory offers a list of ophthalmologists experienced in managing and treating cystinosis.
Keeping track of symptoms and noting changes is a good way for you and your doctor to assess the status of corneal crystal buildup. Use this Eye Symptom Tracker to see how symptoms change over time.
Download Eye Symptom trackerUse this helpful guide to start a conversation with your eye care specialist about a treatment plan for ocular symptoms of cystinosis.
Download Discussion GuideThis tool can help coordinate and easily share information among your healthcare providers when preparing for your cystinosis eye exam and appointment.
Download Coordination of Care ResourceHaving social support may help to improve well-being and foster the ongoing ability to manage challenges.
Cystinosis Research Network / www.cystinosis.org
Cystinosis Research Network is dedicated to supporting and advocating for research, providing family assistance, and educating the public and medical community about cystinosis.
Cystinosis Research Foundation / www.cystinosisresearch.org
The Cystinosis Research Foundation is dedicated to finding better treatments and ultimately a cure for cystinosis, and to educating the public and medical community to ensure early diagnosis and proper treatment.
The National Organization for Rare Disorders (NORD) / www.rarediseases.org
NORD is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 300 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.
The Center for Chronic Illness / www.thecenterforchronicillness.org
The Center for Chronic Illness sponsors a web-based support group for adults with cystinosis called Living with Cystinosis.
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