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Sickle Cell Disease Overview
Sickle Cell Disease
What is Sickle Cell Disease (What is SCD)
Experience with Sickle Cell Disease (Your experience with SCD)
A Healthcare Provider’s views on Sickle Cell Disease
Sharing other sickle cell experiences
A parent’s journey with sickle cell disease
Growing up with Sickle cell disease
Growing up with Sickle cell disease (2)
Challenges in Adults with Sickle Cell Disease
Challenges in children with Sickle Cell Disease
Challenges in Children with Sickle Cell Disease (2)
The Newborn Screening Procedure
What next after a positive result?
The First discussion with parents of newly diagnosed patients
Finding out my child has sickle cell disease
Sickle Cell Disease can be seen in other ethnicities
Finding out my Child has Sickle Cell Disease (2)
Reaction to my child’s diagnosis
Questions parents ask
Discussing Penicillin prophylaxis
Advice to parents
Sharing advice from one parent to another
Sharing advice from one parent to another (2)
Sharing advice from one parent to another (3)
Earliest Age patient presents with symptoms
Parental concerns about sickle cell disease
Describing Chronic Pain
My experience with chronic pain – (Chronic Pain – My story)
Dealing with blood Clots (Complications – blood Clots)
My experience with Priapism
Getting a transfusion for acute chest syndrome
Lifestyle advice from a patient
The importance of self management
Access to Sickle Cell Care when choosing college
Choosing the right Emergency Room
Psychological Support in Sickle Cell Disease
Talk to your Doctor about Nutritional Supplements
Transitioning to adult care
Coping with my child’s Sickle Cell disease
Coping with my child’s Sickle Cell disease (2)
Coping with my child’s Sickle Cell disease (3)
Coping with my child’s Sickle Cell disease (4)
Blood Transfusion & Blood Safety
Type & Crossmatch Your Blood
Getting a Transfusion
Getting an Exchange Transfusion
A guide to Red Blood Cell Exchange
Pat Corley Video
Blood Transfusion & Blood Safety
Type & Crossmatch Your Blood
Getting a Transfusion
Getting an Exchange Transfusion
Reluctance to have Transfusions
A guide to Red Blood Cell Exchange
Pat Corley Video
The importance of research in sickle cell disease
Clinical Trials and their Importance
Maintaining Privacy & safety in research
Hydroxyurea in Sickle Cell Disease
What to expect with Hydroxyurea
What did you Know about Hydroxyurea & How has it helped you
Getting to know about hydroxyurea
My Child’s experience with hydroxyurea
What Do You Think Are the Benefits of Hydroxyurea
Side Effects of Hydroxyurea You experienced
Benefits of Hydroxyurea for Daughter
Litte improvement with Hydroxyurea
What Negative Effects of Hydroxyurea do you know
Better Quality of Life with Hydroxyurea
Challenges faced before going on Hydroxyurea
Deciding on Hydroxyurea and Concerns
Decision Making Process for Hydroxyurea
Being Introduced & deciding on Hydroxyurea
For Parents Considering Hydroxyurea for Their Kids
Recommendations to potential Hydroxyurea Patients
What was your understanding of Bone Marrow Transplant before making a decision
Getting my transplant
What do you think of your experience with Bone Marrow Transplant
A Parent’s transplant experience
My family’s journey with Sickle Cell Disease
Difficulties finding a match
How did you come about being a donor
How did it feel to be a match
Your experience during donation
Do you regret being a donor
Your advice to potential donors
Be the Match
Transplant Timeline – I
Preparing for the Bone Marrow Transplant
Counseling before transplant
Financial Implications of the Transplant
Getting a Bone marrow transplant
How did you feel about having a Bone Marrow Transplant
Transplant day (What happened on transplant day)
How was the procedure explained & what were your concerns
Getting a Central line
Support System during Transplant
Interaction with the Transplant team
Coping with Chemotherapy
Any painful procedures during Transplant?
Difference between expectations and actual procedure
Coping with Hospital Staff
The early stages after the transplant
Precautions Post transplant
Post-Transplant – Routine after transplant
Post-Transplant Support & Engraftment
Pyschology & Physical therapy during transplant
Being in Isolation
Being in Isolation
Turning point during transplant
When did the transplant start looking like a success
Finances and Post Transplant
Post-discharge Support
Bone Marrow Transplant & Regret
How did you feel about getting discharged
Getting back to normal life
Getting discharged & what happens next
Being Pain Free
Getting a Bone Marrow Transplant
Regrowth of Hair
Side Effects of Chemotherapy (Effects of BMT Chemotherapy)
Effects of Transplant chemotherapy (1) (Effects of BMT Chemotherapy 1)
Effects of Transplant chemotherapy (2) (Effects of BMT Chemotherapy 2)
Effects of Transplant chemotherapy (3) (Effects of BMT Chemotherapy 3)
Losing Hair
Dealing with the risk of infertility
Mouthsores post Transplant
Hairloss post transplant
Weakness post transplant
The risk of GVHD
Considering Bone Marrow Transplant
Deciding on Bone Marrow Transplant
What it was like making the decision for your son to have a Bone Marrow Transplant
Recommendations to potential transplant patients
Reconsidering transplant despite Side effects of treatment
Advice to potential transplant patients
Considering a BMT & what influenced decision
How did the people around you influence your decision
Deciding to get a BMT
The Decision making process
General Decision Making
Importance of family decision making
Treatment decision making in Sickle cell disease
How did the people around you influence your decision
Deciding to get a BMT
Advice on making decisions about treatment
Transplant decision making
Making decisions on child’s care
Let's talk about Sickle Cell Disease
Sickle Cell Disease Overview
Sickle Cell Disease
What is Sickle Cell Disease (What is SCD)
Experience with Sickle Cell Disease (Your experience with SCD)
A Healthcare Provider’s views on Sickle Cell Disease
Sharing other sickle cell experiences
A parent’s journey with sickle cell disease
Growing up with Sickle cell disease
Growing up with Sickle cell disease (2)
Challenges in Adults with Sickle Cell Disease
Challenges in children with Sickle Cell Disease
Challenges in Children with Sickle Cell Disease (2)
The Newborn Screening Procedure
What next after a positive result?
The First discussion with parents of newly diagnosed patients
Finding out my child has sickle cell disease
Sickle Cell Disease can be seen in other ethnicities
Finding out my Child has Sickle Cell Disease (2)
Reaction to my child’s diagnosis
Questions parents ask
Discussing Penicillin prophylaxis
Advice to parents
Sharing advice from one parent to another
Sharing advice from one parent to another (2)
Sharing advice from one parent to another (3)
Earliest Age patient presents with symptoms
Parental concerns about sickle cell disease
Describing Chronic Pain
My experience with chronic pain – (Chronic Pain – My story)
Dealing with blood Clots (Complications – blood Clots)
My experience with Priapism
Lifestyle advice from a patient
The importance of self management
Access to Sickle Cell Care when choosing college
Choosing the right Emergency Room
Psychological Support in Sickle Cell Disease
Talk to your Doctor about Nutritional Supplements
Transitioning to adult care
Coping with my child’s Sickle Cell disease
Coping with my child’s Sickle Cell disease (2)
Coping with my child’s Sickle Cell disease (3)
Blood Transfusion & Blood Safety
Type & Crossmatch Your Blood
Getting a Transfusion
Getting an Exchange Transfusion
Reluctance to have Transfusions
A guide to Red Blood Cell Exchange
Pat Corley Video
The importance of research in sickle cell disease
Clinical Trials and their Importance
Maintaining Privacy & safety in research
Treatment options for Sickle Cell Disease
Blood Transfusion & Blood Safety
Type & Crossmatch Your Blood
Getting a Transfusion
Getting an Exchange Transfusion
A guide to Red Blood Cell Exchange
Pat Corley Video
Hydroxyurea in Sickle Cell Disease
What to expect with Hydroxyurea
What did you Know about Hydroxyurea & How has it helped you
Getting to know about hydroxyurea
My Child’s experience with hydroxyurea
What Do You Think Are the Benefits of Hydroxyurea
Side Effects of Hydroxyurea You experienced
Benefits of Hydroxyurea for Daughter
Litte improvement with Hydroxyurea
What Negative Effects of Hydroxyurea do you know
Better Quality of Life with Hydroxyurea
Challenges faced before going on Hydroxyurea
Deciding on Hydroxyurea and Concerns
Decision Making Process for Hydroxyurea
Being Introduced & deciding on Hydroxyurea
For Parents Considering Hydroxyurea for Their Kids
Recommendations to potential Hydroxyurea Patients
Understanding BMT
What was your understanding of Bone Marrow Transplant before making a decision
Getting my transplant
What do you think of your experience with Bone Marrow Transplant
A Parent’s transplant experience
My family’s journey with Sickle Cell Disease
Considering BMT
Considering Bone Marrow Transplant
Deciding on Bone Marrow Transplant
What it was like making the decision for your son to have a Bone Marrow Transplant
Recommendations to potential transplant patients
Reconsidering transplant despite Side effects of treatment
Advice to potential transplant patients
Considering a BMT & what influenced decision
How did the people around you influence your decision
Deciding to get a BMT
Getting a transplant
Difficulties finding a match
How did you come about being a donor
How did it feel to be a match
Your experience during donation
Do you regret being a donor
Your advice to potential donors
Be the Match
Transplant Timeline – I
Preparing for the Bone Marrow Transplant
Counseling before transplant
Financial Implications of the Transplant
Getting a Bone marrow transplant
How did you feel about having a Bone Marrow Transplant
Transplant day (What happened on transplant day)
How was the procedure explained & what were your concerns
Getting a Central line
Support System during Transplant
Interaction with the Transplant team
Coping with Chemotherapy
Any painful procedures during Transplant?
Difference between expectations and actual procedure
Coping with Hospital Staff
The early stages after the transplant
Precautions Post transplant
Post-Transplant – Routine after transplant
Post-Transplant Support & Engraftment
Pyschology & Physical therapy during transplant
Being in Isolation
Being in Isolation
Turning point during transplant
When did the transplant start looking like a success
Finances and Post Transplant
Post-discharge Support
Bone Marrow Transplant & Regret
How did you feel about getting discharged
Getting back to normal life
Getting discharged & what happens next
Being Pain Free
Getting a Bone Marrow Transplant
Regrowth of Hair
Risks & Benefits
Side Effects of Chemotherapy (Effects of BMT Chemotherapy)
Effects of Transplant chemotherapy (1) (Effects of BMT Chemotherapy 1)
Effects of Transplant chemotherapy (2) (Effects of BMT Chemotherapy 2)
Effects of Transplant chemotherapy (3) (Effects of BMT Chemotherapy 3)
Losing Hair
Dealing with the risk of Infertility
Mouthsores post Transplant
Hairloss post transplant
Weakness post transplant
The risk of GVHD
Making a Decision
The Decision making process
General Decision Making
Importance of family decision making
Treatment decision making in Sickle cell disease
How did the people around you influence your decision
Deciding to get a BMT
Advice on making decisions about treatment
Transplant decision making
Making decisions on child’s care