Guest Blog by Jenna Walters

I believe in supporting people who want to advocate for sickle cell disease awareness and education.

Jenna Walters wrote the following blog,"Experimental Treatments for Sickle Cell Anemia" and I support her efforts to participate in this important work.

"Sickle cell anemia is an inherited disorder where the usually round red blood cells become sickle shaped. This causes blockages in the capillaries which leads to episodes, called “crises,” of severe pain in the joints, abdomen, chest and back. The disorder affects mostly people of African descent. Over the years experimental treatments have been used to help ease the symptoms of sickle cell anemia. They include:

Nitric Oxide TherapyInhaled nitric oxide is used to help capillaries to dilate, or open up. This lets the blood flow more easily because it keeps the sickled blood cells from sticking together and forming clots, which can lead to sickle cell crises.

Stem Cell Transplants
Stem cells are cells that can turn into any sort of cell in the body, including blood cells. This sort of stem cell transplant is basically a bone marrow transplant. A donor is found for the patient and their own bone marrow is destroyed through courses of chemotherapy or radiation. The donor’s stem cells are then intravenously fed into the patient in the hopes that they’ll create new, healthy red blood cells. This procedure is usually done on people whose sickle cell anemia has become unmanageable, because it's frankly risky. The patient’s body can reject the donor's cells, which will lead to complications.

Gene Therapy
Gene Therapy is now being explored for diseases ranging from sickle cell to peritoneal mesothelioma. Medical researchers now believe it may be possible to replace a patient’s defective sickle cell gene with healthy genes. They can do this by putting the healthy gene into the bone marrow of the patient. They can also find a way to “switch off” the sickle cell gene while turning on a gene that causes the production of fetal hemoglobin, which would stop the blood cells from sickling. Researchers are also looking for drugs that can support the production of fetal hemoglobin. One of the drugs now under study is Vorinostat.

Possible Clinical Trials - MP4CO therapy
Some researchers believe that combining the drug MP4CO with more traditional therapies can dilate the blood vessels and get oxygen quickly into the cells. This can either stop or shorten the length of a sickle cell crisis."

sources:
mayoclinic.com,
Sciencedaily.com,
Possible Upcoming MP4CO Clinical Trials

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.