Supporting Sickle Cell Support Groups

I recently read a story on a facebook sickle cell group page about a young woman with sickle cell who went to the doctor with her younger sister. Her younger sister was newly diagnosed with sickle cell AND was having a pain ‘crisis’. The older sister was shocked at the doctor’s response when he referred them both to a hematologist and then said, “I didn’t know what to do with sickle cell.”

The shocking part about this story is that the young girl’s pain ‘crisis” was not addressed. This was shocking because of the basic requirement for medical professionals to "treat" sick people.

What does this say about sickle cell treatment today? There is still a lot of work to be done.

We still have to participate in educating the medical community, informing the public, and advocating for respect, good treatment and compassion. We (people with sickle cell) have to support each other.

Sickle Cell Support Groups are a united voice for people suffering with this disease. Together health care leaders, SCD patients, medical staff, friends and family do make a difference.

Together, they encourage us to live well and live long. They inform us and answer questions that relate to our experiences (bad or good) with health care providers. They plan events in the community to bring awareness and put a face on sickle cell. They work to encourage the political process related to sickle cell policy, research and funding. They also empower us to take charge of our health.

Sickle Cell Support Groups are everywhere.

Search the internet for “sickle cell support groups” for your city or state. Ask your hospital’s education or patient services department, look for clinics, medical groups or sickle cell advocacy groups that meet on a regular basis.

Get involved and have your say. Be apart of the bigger fight because there is power in numbers. Together, we will win this battle against sickle cell disease.

If you can't find a support group, go to on-line groups like People Living With Sickle Cell.

Or try Facebook. There are a lot of facebook group links where people with SCD share information and encourage each other. (My facebook page is just one example).

Let’s not tolerate bad medical care, medical disrespect, or ignorance to go unchecked. We can (together) address our needs one doctor at a time, one hospital at a time, one city at a time and one nation at a time.