The Hina Patel Foundation Cares

The Hina Patel Foundation in Bakersfield, CA works to support Sickle Cell Disease awareness and screening programs in India. The quote below is from their recent trip to India 2012:

“Sickle Cell camp in India was a huge success. We went to 5 villages (Zankhari, Chakara, Ambach, Mahuvaria, and Surali) and took samples of 3,732 people.

851 had sickle cell trait, 67 had sickle cell disease and approximately 40% of them were newly diagnosed.

They had pain crisis but due to poverty and living far from the city without transportation. These people usually stayed home and suffered with the pain.

We diagnosed a girl about 8 years of age that could not stand or walk due to multiple pain crisis. This was very sad. Her brother also was diagnosed with the disease.
Our foundation provided education about sickle cell, gave each tested person a personal report about sickle cell with explanations. We provided blood grouping to all 3,732 people. Healthy individuals received a “normal” report card with their blood type and on back of the card it tells them the importance of donating blood (a live blood bank for sickle cell patients).

The 851 sickle cell trait individuals got a card indicating they were a “carrier” and on back of the card it explained what it means to be a carrier. The card also explained that these “carriers” should seek genetic counseling when reaching appropriate age to get married and have children.


The 67 individuals with sickle cell disease were given a card that explains what they must do to take care as far as taking medicine, drinking 10 cups of water, dress warm, do not over exert, etc. Each person was given Folic Acid, Larium and Toradol for pain for 1 month. We also set up a program where they will receive these three medications once a month for entire year along and 4 times per year, they will receive CBC (funded by our foundation).

The doctor I worked with also gave check-ups.


Our goal (Hina Patel Foundation) is to continue screening once a year and to keep funding for medication. There are roughly 8 million people that live in this tribal region of Gujarat who mostly carry the sickle cell gene.”

The Hina Patel Foundation is doing their part to support sickle cell disease awareness, treatment and care. They are an example of doing something……anything for your fellow man, woman and child with sickle cell disease.

Thank you Hina Patel Foundation, the angels in heaven are smiling down on you.

Visit The Hina Patel Foundation website to find out more and to donate to their efforts.

****** Sickle Cell Awareness ******* One Reader At A Time

I have two important blogs to write.

(1) Is there a cure or NOT? part 2.

(2) The Hina Patel Foundation's work in America and India.

First, I thought I'd add a video about the recent sickle cell awareness & book signing event at Russo's Books in Bakersfield, CA. March 24, 2012

Fallen Soldier

Today I was reminded why I speak out about sickle cell disease. I found out that Phyllis Zachery-Thomas, a long-time sickle cell disease advocate and founder of SCD Soldier Network recently passed away.

Phyllis was an inspiration to me and one of the first voices on the internet, that I knew of, telling the world about sickle cell disease. She united people and inspired them to do something....anything.
God bless Phyllis Zachery-Thomas. Her memory lives on right here.

Sincerely,
P.Allen Jones

Stem Cell Cure For Sickle Cell (Or NOT?)

I have read headlines that say, “Cure for Sickle Cell Disease!!!!!!” Then I asked myself, Why am I NOT cured????

I looked around for first-hand reports of people who were “cured,” but no one would speak after getting the cure. One year ago, after an “adult” stem cell clinical trial, I tried to speak to one participant. She wouldn’t (or couldn’t) talk to me. It all seemed a little too fishy.

I needed an answer. Is there a cure for sickle cell disease, or not? In my search, I found a lot of information. It is very complex, but I believe WE need to understand what doctor’s are doing for us AND to us.

I found one good resource in California, a presentation by Dr. Donald Kohn, Director of the Human Genome Medicine Program at University of California at Los Angeles (UCLA).

Based on Dr. Kohn’s presentation, I will write a three-part blog on the subject of “Is there a cure for sickle cell disease?” I will try to break the information into bite size pieces, so WE can understand and digest it all.

First, I’m going to address bone marrow stem cell background, second, what doctor’s are doing for children today, and lastly, what’s coming in the future for adults.

Here goes.

According to Dr. Kohn - 150 newborn cases per year (in Calif.), 9000existing (Calif.), 80,000 in USA, current medical cost = $10,000 - 15,000 per person (per year), and most sickle cell related medical cost are paid by Medicaid or Medical. (really???)

I guess there is a financial reason for the medical community to find a cure for us. And, that’s good!!!!

Part I - Is there a cure for sickle cell? (background)

1. What is the biology of sickle cell? Our red blood cells are packed with Hemoglobin (the oxygen carrying protein). It has 4 proteins, (2) Beta and (2) Alpha chains. On one of the Beta chains (the 6th amino acid) it is mutated (HbS). In conditions of low oxygen (one trigger), the mutated hemoglobin molecule (HbS) attracts to another mutated (HbS) molecule and they stick together. This causes the hemoglobin to go from round flexible shape to rigid sickle shape.

2. In 1982, the first (accidental) cure for sickle cell disease occurred by a bone marrow stem cell implant to treat a patient who had leukemia AND sickle cell disease. The resulting stem cell implant cured the “child” of sickle cell disease by accident. NOTE: I have no information on what ever happened to that patient. If the “cure” lasted, what their quality of life was, nothing.

3. How is bone marrow stem cell transplant treatments used to “cure” sickle cell?
The body makes red blood cells from stem cells in bone marrow or cord blood. Stem cells are transplanted from the bone marrow or cord blood of a donor (hopefully, completely matched to us). The goal is for our bodies to accept the transplant AND make our bone marrow produce (good) red blood cells without mutated HbS hemoglobin.

End Part I

The following video is hard to watch, but necessary to understand how much bone marrow donors go through for us.
How Bone Marrow is taken from donor.
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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