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In 10% to 15% of cases, there is no clear cause of CP. There is increasing recognition that genetics plays a part, but no standardized approach to genetic testing in patients with CP exists. In this study we asked the question whether both people with and without known risk factors for CP should have genetic testing.
The Cerebral Palsy Foundation has created a factsheet to help guide you in understanding and treating pain with CP. This fact sheet has been created for individuals with cerebral palsy to provide basic guidance surrounding common causes and potential treatment of pain.
We got the diagnosis of Cerebral Palsy when Lelia was 18 months. I was really happy, as we didn’t know what was wrong with her before then. She had low tone. She couldn’t roll over. She couldn’t sit up. Of course she didn’t walk. The diagnosis gave it a name, something I could work with, and I became a kind of vigilante mother, determined to get the best care for my daughter.
Cerebral palsy refers to a group of conditions that are caused by problems in brain development and that affect how movement and motor control happen in children. Problems with walking and talking are often the way people start a conversation about cerebral palsy.
For women with Cerebral Palsy, self-advocacy is probably the most important part, but it's also probably the hardest part because most of those doctors have not encountered women with disabilities. You really have to tell them what you need and tell them what to expect.
When scheduling and preparing for an OB/GYN appointment, women with Cerebral Palsy have additional challenges to consider and address when both scheduling the appointment and once they go their appointment.
For women with Cerebral Palsy, finding a new OB/GYN can be difficult for a variety of reasons: accessibility (both to the building and in the exam rooms), staffing and supports for additional physical needs and more.
When you use alternate means of communication it can be really frustrating to go out in community. It is hard to know whether people are understanding you and whether they will take the time to listen. A lot of times it's hard for people to admit that they're not always comfortable with a device or a wheelchair or person who does things differently. So the more we can expose and educate people the better off we all will be. When we talk about acceptance, we're not just talking about people in society accepting people with disabilities. We're also talking about people with disabilities who are using alternate means of communication and how difficult it is for them to be out in the community.
5 things for women with Cerebral Palsy to consider when preparing for their OB/GYN appointment
One of the things that we typically forget when we look at kids who have conditions like CP, is that they're first and foremost, children.
The World Health Organization has developed the ‘International Classification of Function’. This gives us a way to think about any health condition. Here we can see many ideas that we need to think about with CP. We can also see how these many ideas are connected to one another.
