Members of an Alabama group are on their way to Montgomery to petition lawmakers to build a support network for those suffering from rare diseases.
Rare Alabama is partnering with HudsonAlpha, UAB Medical Center and Alabama Children’s to push for state lawmakers to pass legislation to create a rare disease coalition to reform health care to expand coverage, but also to build a social network among those who suffer from Rare diseases.
According to the National Institute of Health, a disease is rare if it affects less than 200,000 people. When you add up the numbers, 30 million, or one in ten people suffer from a rare disease. The NIH says of the 7,000 rare diseases, there are only 450 FDA approved treatments. Swapna Kakani says though there’s only about a dozen people in the state that share her specific disease, she can relate to others who have unique conditions like her’s.
“Although we all have different rare diseases, our experiences are often the same, and it's important for the Alabama Rare community to unite,” said Kakani.
Kakani suffers from short bowel syndrome, a disease that severely affects the digestive system.
This condition required her to be fed through an IV and a feeding tube in her stomach for 20 years before she was able to get the right treatment and receive a short intestine transplant, allowing her to eat and digest more normally.
Kakani says she only knows of about a half-dozen other people in Alabama that have short bowel syndrome. One of those people is 4-year old Leila Fitzgerald of Huntsville, who was diagnosed with the short bowel syndrome at birth.
Leila’s mother Farah Woosley said that the formula she needs to care for her daughter is not covered under most insurance plans in Alabama. A case of the formula needed to feed Leila for just one month can cost upwards of $500.
That's why she's asking state lawmakers and medical leaders to form a coalition for rare diseases, to give patients better access to care, and to build a network that makes diagnosis and treatment easier, and not as expensive for Alabamians.
“That is an out-of-pocket expense that I have to take on. And it is a struggle because this is something my child needs, she has to have it,”
Woosley says having other parents to talk to about the common challenges of caring for someone with her disease, for example, to take Leila swimming or the best way to administer her food and medication. She says talking about her child's specific syndrome with others who are going through the same thing goes a long way in helping she and her daughter live a normal life.
“It's a big help. It's definitely a big help, we can talk to each other about ideas of what we can do,” said Woosley.
Rare Alabama is partnering with Hudson Alpha, UAB Medical and Alabama Children’s to continue research and provide care for those affected. Kakani says these organizations have been on the cutting edge of disease treatment and research.
“HudsonAlpha is at the forefront of research and to have that in our backyard is very valuable to our community,” said Kakani.
February 28th is Rare Disease Day in Alabama, and the group will be in the statehouse on Wednesday, March 1st to raise awareness and support a bill to be introduced to create a rare disease coalition here in Alabama.
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