Should I let my 12-yr old go to public school with sickle cell anemia?

Posted by Aperson @tenleyv, Mar 6, 2023

I have a daughter with severe sickle cell anemia, she has had many blood transfusions and really wants to go to public middle school for eighth grade. She has many strokes and bad eyesight and just severe anemia. She also has Crohns Disease. What are your thoughts?

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Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Mar 7, 2023

@tenleyv
I’m so sorry to hear what your daughter has had to deal with in her life. Also, it must be frightening for the parents too.
Has she attended any school so far or has she been homeschooled?
What are the opinions of her hematologist and gastroenterologist?
I assume that the risk of any infection increases the risk of a sickle cell attack.
Also, is she on immunosuppressives for Crohn’s?

Aperson | @tenleyv | Mar 7, 2023

In reply to @astaingegerdm "@tenleyv I’m so sorry to hear what your daughter has had to deal with in her..." + (show)

She has never been to public school. Her gastroenterologist said that he's ok with it, as many kids go to school with Crohn's. However, her hematologist has her doubts based on the severity of her anemia. Yes, she is on immunosuppresives.

Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Mar 7, 2023

@tenleyv
Thanks for your answer.
I understand the hematologist’s concern- I also understand your daughter’s desire to attend a public school at this point in her life c
If you want to pursue it I think you need to have a discussion with the hematologist. Would she need more frequent blood tests, medications, rest periods, physical activity restrictions etc?
Also, would the school have a nurse-RN?

Aperson | @tenleyv | Mar 7, 2023

In reply to @astaingegerdm "@tenleyv Thanks for your answer. I understand the hematologist’s concern- I also understand your daughter’s desire..." + (show)

The school does not have a nurse-RN. Thanks for your helpful feedback.

Colleen Young, Connect Director | @colleenyoung | Mar 10, 2023

In reply to @tenleyv "The school does not have a nurse-RN. Thanks for your helpful feedback." + (show)

@tenleyv, I want to share a small story that may be helpful. When my daughter was in grade school, a new student joined her class in 3rd grade who was immunosuppressed.

The part that I particularly appreciated was the courage and dedication of the family to educate others. They spent time educating the school population for the successful integration of their child to the benefit of other children and adults:
- Notices were sent to all parents with helpful guidance about what immunosuppressed means and what we can do to keep everyone in the class healthy.
- The mom and daughter presented to the class.
- They also started a school club about rare diseases and advocacy.

For me, I appreciated that my robustly healthy child got a new perspective. She learned not to take health for granted and to be more considerate.