By Sean Marshall
Interesting international news this week coming from India. According to The Times Of India, one of India's online news sites, it was reported that “Ahmed Patel, Rajya Sabha Member from Gujarat and political secretary to Congress president Sonia Gandhi while speaking in the Rajya Sabha on Tuesday demanded action to control the sickle cell anemia in the country.” It may sound like a mouthful but what is going on is that a large government full of many people is finally demanding some sort of resolution to sickle cell disease.
It was explained that Ashmed said that “compared to other parts of the country spread of sickle cell disease is much higher and 34% tribal population is suffering from the disease . “ There were also quotes pulled form the article explaining "The disease is directly related to malnutrition for which immediate attention is needed.” There was an emphasis in the article for “a great need of pre-marriage counseling to prevent the spread." This was all early strategies from Indian politicians and isnt set in stone. What is important is that an effort is being put forth.
If you would like to see the article go here: http://timesofindia.indiatimes.com/city/ahmedabad/Patel-flays-govt-over-sickle/articleshow/45464740.cms
Other news this week includes an article reveling that the majority of newborns in the United States with sickle cell are surviving to adulthood. The article was centered around evidence presented in San Fransisico at the ASH Annual Meeting and Exposition that showed “Approximately 91% of newborns with sickle cell disease survived to age 25 years, although the mortality rate accelerated thereafter.”
Information included quotes from Timothy McCavit, MD, MS, assistant professor of pediatrics at the University of Texas Southwestern Medical Center. In the article he was quoted saying “the Cooperative Study of Sickle Cell Disease,” estimated an average survival to age 44 years for men and 48 years for women with sickle cell anemia.
This was all explained by “data from 1,214 patients who were enrolled in the Dallas Newborn Cohort after they were identified as having sickle cell disease. Overall, the survival rate for the entire Dallas Newborn Cohort until age 25 years was 91.4%.”
Lastly it was shown that this study had first been conducted in the 1980's, this means that despite all the pain many people with sickle cell live with not everyone is fated with death when diagnosis. This gives hope to many especially considering most of the test subjects are still alive today.
If you would like to read the full article in detail click the link below: http://www.healio.com/hematology-oncology/hematology/news/online/%7B9b876b07-2e33-4be2-be7d-53c2ca0ed2e8%7D/majority-of-newborns-with-sickle-cell-disease-survived-to-adulthood
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By Sean Marshall
Troubling news from bloddjournal.com according to their latest report on sickle cell disease individuals suffering form the illness may have reproductive issues. According to bloodjournal.com a leading website in both medical essays and medical news reports involving hematology and clinical research a new report has arisen explaining the problems sickle cell can have on those who want children. The article itself explained that “up to 24% of men with SCD may develop hypogonadism, a clinical syndrome associated with poor testosterone production, infertility, ED, and poor libido.” Unfortunately the article reported that doctors are not entirely sure why this occurs in men with sickle cell disease. As explained here “multiple theories as to why these abnormalities develop in males with SCD include zinc deficiency and vasoocclusion of testicular blood vessels, but the precise cause is unknown. The theory regarding vasoocclusion of testicular vessels is interesting given reports of recurrent testicular infarction in individuals with SCD.”
Other male issues included abnormal sperm due to “abnormal morphology occur more frequently males with SCD.” As well as erectile dysfunction which is caused by “the result of prolonged or recurrent priapism, which is caused by SCD.”
Fertility in women was also covered but it was stated that there are lower pregnancy rates in women with sickle cell disease but it could be there needs to be further studies to prove if there is a link.
If you would like to read the full article you can find it here: http://www.bloodjournal.org/content/124/24/3538?sso-checked=true
Other issues this week include new developments in cell theropy. In an article that was published December 5th on newswire.com it was explained all about the main obstacles stem cell regeneration surgeries go through. The particular issue covered was overcoming graft rejection of new stem cells into body.
It was stated that “current treatment includes the use of systemic immunosuppression, which leaves the patient at risk for opportunistic infections.” Which is unfortunate and one of the main risks to those who have sickle ell disease. Many people suffering from sickle cell disease often turn to new types of treatment for their disease and regenerative surgeries are becoming more popular. Luckily Scientists now are investigating whether Veto Cell technology, which the article explained was “when the body selectively tunes immune response can change.” The article went on to mention that If this treatment is possible it could change “how immunologists treat blood cancers and bone marrow transplants, as well as the process of how organs are repaired and new ones are regenerated.”
If you want to see the article for yourself click here: http://www.newswise.com/articles/new-development-in-cell-therapy-veto-cell-technology
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This section is solely to let our Sickle Soldiers tell their story trials & tribulations alongside things they feel are wrong in the Sickle Cell Community