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The people who know the most about the challenges of living with cystinosis are those who experience it every day. That's why Cystinosis United has collected articles from people with cystinosis and their friends and families. Here, you'll find tips to help you face the daily challenges of cystinosis head on.
Caring for a child with cystinosis comes with a unique set of considerations that you face every day. Read more about resources available to you to help you manage these challenges.
As a caregiver, your child with cystinosis is your focus. But taking care of others may affect your own health. Your self-care may fall to the side. Do you get enough sleep, eat well, exercise, take breaks, and visit your own doctor? All of these may help keep you healthy so you can help care for someone with cystinosis.
Here are some things you can try to help relieve stress and stay healthy:
Advocacy is learning how to speak up for yourself or your child while living with a disease. By doing so, you may get the information you need to make good decisions about your health and well-being. Being your own advocate involves finding support, knowing your rights, and learning how to solve problems. Most people with a lifelong disease such as cystinosis learn how to become an advocate, and you can, too.
Some ways to make sure you are ready to speak up include:
A child with cystinosis may come across as being different and so may draw the attention of classmates. While your child may never be bullied, it's important to know it may happen and why your child may become a target.
Most bullying likely comes from a lack of understanding of cystinosis and what it means to live with a lifelong disease. So, education is key. Talking to teachers and other school staff can help them—and your child’s classmates—understand your child’s situation. Knowing that there are adults who can help may reassure your child when facing social issues. Educating your child may help, too. Knowing what to do if bullying occurs can help your child feel more comfortable and confident.
Help teachers and school staff understand the facts about cystinosis. Download this brochure and print it out to share in school.
Some things about cystinosis that may cause bullying at school include:
If you suspect your child is being bullied at school, contact their school administrator to let them know how they can help.
Help your child’s classmates learn about cystinosis. Share Michael's Activity Book with teachers so they can teach the disease in the classroom.
Children with cystinosis want the same opportunities as any other child at school. They want to learn how to read, play at recess, and make friends. But sometimes the challenges of living with cystinosis may get in the way. Below are some tips to help you work with your child’s school so cystinosis is less likely to get in the way of your child’s experience.
Help teachers and school staff understand the facts about cystinosis.
Cystinosis may cause your child to miss school. The major reasons for absences may be:
If you know your child is going to be absent, be sure to tell the school and your child’s teacher in advance. You can even make a missed-school plan with your child’s teacher. This can help your child keep up with classwork during absences.
Helping peers understand cystinosis can make a big difference for your child. You, your child, or the school nurse may want to speak to teachers and students at the start of the school year to explain cystinosis to them.
This checklist contains helpful tips for making your child’s life more manageable at school. Work with your child’s school to complete this checklist.
Create a plan for managing your child’s medicine at school
Consider:
Identify a staff member to be your child’s go-to advocate
Ask your child’s teacher to make special arrangements to make the classroom more comfortable for your child
Consider asking if your child can:
Work with the school to create a plan for keeping up with schoolwork
You might want to:
Discuss how cystinosis affects your child’s participation in physical activities and/or recess
Plan what other students will be told about your child’s cystinosis
Take advantage of these tools and resources to help everyone in the family understand cystinosis better. They are full of information and can be helpful to people of all ages. Teachers and nurses can also use these to educate children in classrooms or doctors’ offices.
If you have questions about cystinosis, use this informational download to start a conversation with your healthcare provider. When you better understand cystinosis, you can educate those around you and build the network of support you need.
This activity book is filled with fun things for kids to do while they read and learn what it’s like for Michael to live with cystinosis. It’s a great way to start a conversation with children to help them understand cystinosis.
Start the discussion now with these downloadable coloring pages! Then keep the conversation going for years to come with a bound copy of Michael’s Show-and-Tell Activity Book.
You can check how much you and your child have learned by taking a fun interactive quiz.
Sometimes medical terms can be tough to understand. But learning the words used to talk about cystinosis may help you be clear with doctors, family, and friends. This glossary is a great place to start.
Amino acid: A building block of proteins used in every cell to help the body grow.
Cystine: The amino acid that builds up inside of cells when a person has cystinosis.
Cystine-depleting therapy (CDT): A treatment that works to reduce the buildup of cystine in cells. Learn about this medication option.
Cystine level test: A blood test that measures the amount of cystine in white blood cells at a given time. There are two tests that can measure cystine levels: mixed leukocytes and granulocytes.
Dialysis: A medical treatment to clean the blood when the kidneys do not work as they should.
Fanconi syndrome: A kidney disorder that causes the body to lose important substances needed for good health. It causes extreme thirst and frequent peeing (urination).
Granulocyte: A type of white blood cell that is collected in a blood sample during cystine level testing.
Hypothyroidism: A condition in which the thyroid gland is unable to make enough thyroid hormone, causing the body to not work like it should. Common symptoms include, but are not limited to, slowed growth, tiredness, and weight gain.
Immune system: A group of cells that protect the body against attacks by germs.
Infertility: Inability to cause pregnancy (for men) or inability to get pregnant (for women). Women of childbearing age with cystinosis may become pregnant.
Kidney transplant: A surgery to place a healthy kidney from a donor into the body of a person with failing kidneys.
Leukocytes: Commonly referred to as white blood cells; a collection of cells that help the body fight infections. One of the two available cystine level tests collects leukocytes in a blood sample.
Lysosome: The part of a cell that acts as a “recycling centre” by breaking down proteins into amino acids. This is the part of the cell where cystine becomes trapped and builds up in people with cystinosis.
Myopathy: A disease that affects the muscles, making a person feel very weak.
Nephropathic cystinosis: Cystinosis of the kidney; often called classic infantile cystinosis because its symptoms usually appear within a child's first year of life. This is the most common (95% of all cases) and most severe form of cystinosis.
Photophobia: In patients with cystinosis, a buildup of cystine in the eyes may result in light sensitivity, or the eye's inability to tolerate light. It may also cause eye pain and severe headaches.
Rickets: Softening and weakening of bones in children, usually caused by a lack of vitamin D (phosphate) in the body.
White blood cells (WBCs): Also called leukocytes; a collection of cells that help the body fight infections.
