Road Trip

We recently attended the 38th annual Sickle Cell Disease Association Convention. We travelled to Maryland for a day. September marked the 100th year of the discovery of Sickle Cell Anemia in the western world. The convention for me personally would mark the first time I shared the same space with a large group dedicated to SCA. The speakers shared their stories. The convention allowed us to purchase a table for a day to share the documentary. Marqus was unable to travel his counts were low and he was in too much pain.

One common theme shared by so many was the lack of understanding by health care professionals and the lack of services for the 16-25+ age group.

Also many participants talked about a "death date". They felt they were written off by the health care system and were given hopeless outcomes for life. Many parents shared with us that they were told not to expect their child to grow up.

It was magnificent to meet folks with SCA that were 50-63 years old!

With all the marvels that modern medicine holds there doesn't need to be a "death date"

This is not to say that the complications from this disease will not kill you . I am here to tell you as a parent first , a RN for 30years second we are well aware of every potentially fatal complication.

Marqus has had several by age 27yrs.



We met not only nurses and doctors but speech pathologist , occupational therapist, social workers , community advocates ,teachers and an attorney that has SCA.

The concerns were unanimous why are the routine services that are offered to restore function and or minimize disability not routinely applied to persons with SCA.

I think I have a partial answer. First we can not count the times people say "oh yeah I had a friend or relative die from that" "I didn't know Sickle Cell did that" I remember my own mother in law telling me Marqus would "out grow it" boy I wish she would have been right.



This disease again has no voice in a prime time media slot that will raise awareness and highlight the struggle.

I especially feel that the hardest age group is 16-25+ . This group is expected to go to college then graduate get a job, start a family , have a career , be productive members of society etc etc etc etc. These expectations are difficult enough for a healthy person . Imagine a young person with an illness that can render them incapacitated for weeks at a time.

This disease has the potential for fatal consequences if pushed to its capacity. BY that I mean it must be managed properly.

Marqus can do most anything but he has learned his bodies limits and works within that frame.

It is not wrong for the person with SCA to have to accomplish whatever they want at their own pace.
Other persons with disabilities or challenges have many services for them to succeed.
Persons with SCA must be afforded the same without question.



Here are examples. When Marqus was younger he developed heart failure . He was approximately3 or 4 years old. He began squatting developing blue club like finger nails and was worn out with simple activities. He also had several bouts of dactilytis(small blood vessels of the hands and feet are blocked with sickle cells and it causes pain and swelling ).



My insurance was willing to pay for a push chair . He was too large for me to carry and we had no idea what the outcomes would be with walking. We commuted 30 plus miles one way to the Children's Hospital.



We arrived at the clinic one day and one provider had a smart comment about his chair.

Now I ask the question. If he looked physically impaired would their have been any doubt that he needed this chair? The answer is NO.



Not too long ago when he had an admission for severe pain , low counts and I think fever there was a rumor started on the floor that he was just a difficult spoiled brat and did not want to get cleaned up.

The real reason he could lay on his right side was because of AVN (avascular necrosis of his acetabulum). This translates to death of the cup of the hip joint from lack of useful circulating blood cells due to SCA. Also his abnormal heart rhythmn (beats) kicked in and his heart rate was as high as 150 (normal 60-100).



We washed him up explained to the tech and anyone else that would listen that he will get up and run out of the hospital as soon as he can. He is not the type of person that is attention or drug seeking.

We also asked them to review his history and if he says that he feels like his bones are crushing when he moves call the doctor do not assume anything.



He was in the hospital for 40+ days he went home 50% weight bearing used his walker took a medical withdrawal from class recovered and went back to the business of living.



NOW I ask this question if he had a different diagnosis would that rumor have been started.?

Would anyone have questioned the validity of bone metastasis?(that's when cancer spreads to the bones). No.



Meeting everyone at the conference gave us the strength to continue our mission.

There is so much work to be done.

I will continue to share the information we gathered .

I hope and pray we can network with the many folks that want this disease to be managed with respect and dignity. The many people who are exhausted from the silent suffering.

I pray that we can unite our voices . There is strength in numbers.



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What started as a class project for Marqus will create a change for many. No more SILENCE!!!!



We are born then we die BUT in between we must LIVE!

Thank You for listening .