By Gina Hankerson “Family Matters” and Denise Dunnam
I am sharing our journey in the life of SCAD from the eyes, words and heartfulness of my sister, who is the mother of two children with SCAD and my sideline view through the years of watching the battle.
When my niece was born in 1990, my sister was told that her daughter has the sickle cell trait, which was not a total surprise since it was known that she and the father had the trait as well as both of their parents.
Back in the late sixties early seventies in the northern state of Ohio there were blood mobiles that would come to our communities and test us for SCAD.
We were told if we had the trait or not, I don’t recall any informative information being shared, it was just something we had.
I had never heard of or knew of any complications until, 1992 when my niece became extremely ill, she was medevaced to an Air Force Base hospital where it was discovered that she has full blown Sickle Cell Anemia Disease. Which means she learned about the disease very early in life. My sister had to help them to be able to cope… learn to pray and build a fellowship with GOD.
During their younger years the children would get pneumonia often, but as adults they get the vaccine and having pneumonia is not an issue for them now.
Also, my sister shares that when the children were younger…the doctors were amazing “superheroes” but as adults the doctors don’t seem to communicate well with one another nor do they listen to her adult children’s concerns, the way that they did when the children were younger.
I have observed that the medical staff is uneducated, regarding SCAD, they don’t have empathy or compassion and seem to be quick to judge, label and either push the narcotics or withhold them. It required our family members to take turns with bedside shifts when our sicklers where hospitalized, due to the lack of care and understanding from the hospital staff. As well as being there to encourage and support our family thru an overwhelming pain crisis, so they never felt alone or defeated.
She also shares some of the differences her two children experienced battling Sickle Cell Anemia, they both have a small body stature but Child#1 suffered painful episodes, strokes, had monthly blood transfusions from 6th grade to 12th, had brain surgery… missed soo many days of school and didn’t get her diploma… no bullying to my knowledge.
Child#2 suffered painful episodes, some blood transfusions, missed some days from school as well, graduated high school with diploma.. no bullying that I know of.
During their school years the school system wasn’t helpful with an educational plan for children who battle SCAD. Their social life, has been full of supportive friends and family, we talk about it… to everyone that will listen… to bring about awareness…many people don’t.. therefore, they are left feeling lonely.
This is what She says about how they cope.
“My children and I are very blessed… we were a military family so we had great doctors when my children were little and our family is the ”bomb dot com” they were there for us from day one and still today.
All of my supervisors on the various jobs that I have worked were super supportive… we were apart of different support groups, my children went to Camp Boggy Creek with other children that had Sickle Cell Anemia and they made life time friends.”
Knowing that my children and I trust GOD to bring them/us thru all of life’s challenges is a daily game changer.
They know that they are living, breathing, walking, talking miracles. They have young babies of their own that have been diagnosed with Sickle Cell Anemia but again we are trusting GOD to show up and show out in their lives.
The life of a parent or relative of a child or adult with sickle cell disease is A plethora of hospital stays, doctors, teachers, paperwork, trials and studies (related to Sickle Cell Anemia), heart break from friends loss of life due to complications from Sickle Cell… and many more issues but all in all meeting very strong fighters that live from day to day holding on to their hope and faith .
I encourage and pray that all families find out as much as possible about Sickle Cell Anemia and share the history of SS with their family members, support each other, explain the process to the children that suffer with SS and help them to cope with the pain ( praying, meditating, using breathing techniques, healthy eating, drinking water/staying hydrated, knowing their limitations, go to support groups, talk to family and friends about how they are feeling. most importantly keep the faith and trust in God as the healer that He is, and He
