HEMOPHILIA
Definition
Hemophilia is a rare disease where blood is unable to clot normally due to a lack of the protein that allows blood to clot. This means that if a person with hemophilia starts bleeding, then it will take a longer period of time for the bleeding to stop. Hemophilia is a genetic disorder meaning that it is inherited. Smaller cuts aren't usually a problem. Treatment includes regular replacement of the specific clotting factors.
Instructional Strategies
There are no special directions that you need to follow when working with someone who has hemophilia they can participate in all of the normal classroom activities. The parent/guardian of someone who has hemophilia should be in communication with a school nurse and faculty. Teachers should be flexible when working with someone who has hemophilia because they often miss school because of treatment, visits to the nurse's office, and other illness-related absences.
Useful Websites
I found a website called KidsHealth that included information that teachers should know about hemophilia. I found this useful. It talks about things such as the fact that kids may have to miss school and teachers should be flexible and willing to work with students. I found this site useful because you could see specifically things that teachers should know as well as there is more information if you click on the links, you can find out more about hemophilia from different people's perspective.
The Benioff Children’s Hospital in San Francisco wrote a patient education page on Hemophilia. They mentioned that children should be placed in a regular classroom. They said that the parent/guardian should keep in touch with the school and have communication with the nurse and faculty. The students should be able to participate in all classroom activities.
Living with Hemophilia had a page on teachers and daycare that was also helpful. It contained facts about hemophilia, things that you can do as an educator, how to deal with bleeding episodes, and how to create a safe environment.
The next website that I found was MedPro RX. They reiterated a lot of the same facts about hemophilia as other sites do and it also talked about a 504 plan. There was information and links to find more information about 504 plans. This was the first website that I found that mentioned the 504 plan which includes reasonable accommodations for students with disabilities.
I found a website where a parent talks about the importance of a 504 plan and why it is beneficial to students, even when it seems that it may not be. While hemophilia may not be a cognitive disability, it may cause a student to miss a period of time in school for doctors visits and such- the 504 helps keep students on track as much as possible.
Research
I found an article, “Impact of mild to severe hemophilia on education and work by US men, women, and caregivers of children with hemophilia B: The Bridging Hemophilia B Experiences, Results and Opportunities into Solutions (B-HERO-S) study”, that has research on hemophilia that talked about how children with hemophilia were very discouraged when it came to school because they felt as though they were not able to keep up with the work because they may have had to be in the hospital for hemophilia-related reasons, or they had bad headaches as a side effect of hemophilia and had a hard time concentrating because of it. This is important to keep in mind as educators because these students already have negative perceptions about school and may have a hard time paying attention due to headaches.
The article that I found, "Treatment adherence in Hemophilia", which talks about how people with hemophilia because of the constant bleeding have damage to their joints which leads to crippling arthropathy, which is a disease of the joints. Prophylaxis, or treatment to prevent bleeding episodes or episodic treatment was found to be the best way to treat hemophilia to reduce arthropathy is through prophylaxis . However, there are many factors that prevent people from being able to have this type of treatment such as access to a treatment center, socio-economic reasons, lack of education on the topic, etc. The article continues on to talk about an expert opinion on how the experts would address these issues and address adherence to prophylaxis.
The article "Biospecific Antibody Therapy" talks about how the current therapy that is being used for people with hemophilia where they inject factor VII is not very effective because people are becoming immune to factor VII. The factor VII treatment isn't always realistic either because it has to be done frequently and it can cost up to $1 million to treat some bleeding events. There was a study that was done to find out the effect of antibody therapy. So far, it seems more efficient than the factor VII injections but it's still early in the research stage. The article also mentions that there are studies being done on emicizumab prophylaxis.
Other
I found this website helpful because had many links to information that would be helpful for people who have hemophilia as well as people who want to better understand hemophilia.
I liked this website because it was all about helping kids talk about hemophilia with their peers and how to have that discussion. It was created by the Center For Disease Control. I think that it could be helpful for students because they will be able to have a conversation about hemophilia in terms that their peers may understand. This could also be potentially helpful for teachers if another student has a question about hemophilia or even to help the teacher better understand.
The next article that I found was "4 Hemophilia Support Organizations You Should Know About". This article is helpful because there are links to the 4 organizations' websites as well as descriptions of the organizations.
Resources (in chronological order)
1. https://www.mayoclinic.org/diseases-conditions/hemophilia/symptoms-causes/syc-20373327 (definition)
2. https://kidshealth.org/en/parents/hemophilia-factsheet.html (useful websites)
3. https://www.ucsfbenioffchildrens.org/education/hemophilia/#4. (useful websites)
4. https://www.livingwithhemophilia.ca/community/teachers-daycare.php (useful websites)
5. http://www.medprorx.com/sending-your-child-with-hemophilia-to-school/ (useful websites)
6. https://hemophilianewstoday.com/2017/08/02/hemophilia-new-school-section-504-physical-education/ (useful websites)
7. https://onlinelibrary.wiley.com/doi/epdf/10.1111/ejh.12851 (research)
8. https://www.dovepress.com/treatment-adherence-in-hemophilia-peer-reviewed-fulltext-article-PPA
(research)
9. https://search-proquest-com.ezproxy.lewisu.edu/docview/1934032409?pq-origsite=summon
(research)
10. http://www.hemophiliafed.org/for-patient-families/resources/toolkits/back-to-school/ (other)
11. https://hemophilianewstoday.com/2018/02/08/kids-can-explain-hemophilia-friends-3/ (other)
12. https://hemophilianewstoday.com/2017/08/03/8566/ (other)