{"id":219414,"date":"2024-09-26T15:25:07","date_gmt":"2024-09-26T19:25:07","guid":{"rendered":"https:\/\/today.uconn.edu\/?p=219414"},"modified":"2024-09-27T11:17:28","modified_gmt":"2024-09-27T15:17:28","slug":"traveling-the-world-with-sickle-cell-disease","status":"publish","type":"post","link":"https:\/\/today.uconn.edu\/2024\/09\/traveling-the-world-with-sickle-cell-disease\/","title":{"rendered":"Traveling the World with Sickle Cell Disease"},"content":{"rendered":"

Sola Odesina, 38, of New Britain’s last name means \u201chunter\u201d in Nigerian, but she says she is only hunting for her next travel destination thanks to God and UConn Health.<\/p>\n

Even living with her painful, inherited, red-blood cell condition of sickle cell anemia, she\u2019s been traveling the globe thanks to the excellent care management she receives by the experts of UConn Health\u2019s dedicated New England Sickle Cell Institute (NESCI)<\/a>.<\/p>\n

Odesina has traveled to over 30 counties so far. Next up is far-away Australia she thinks, for the second time. Before each trip, she consults with her care team at UConn Health to make a backup care plan in the country of her choice.<\/p>\n

\u201cUConn Health keeps me going,\u201d she exclaims.<\/p>\n

\"Sola
Not even sickle cell can slow down Sola Odesina from traveling the globe. Here she is on a ferry from Estonia to Finland.<\/figcaption><\/figure>\n

Growing Up with Sickle Cell <\/strong><\/p>\n

\u201cWe are Nigerians,\u201d says Odesina, the youngest of three siblings. \u201cMy parents came over to the U.S. in the 1980s just before I was born and in 1988 we moved to Connecticut. My parents have sickle cell trait.\u201d<\/p>\n

\u201cMy brother has sickle cell trait, and my sister and I both have sickle cell anemia,\u201d she says. Interestingly, Odesina’s older siblings were screened before she was born for sickle cell by chance after her sister was found to be anemic even though she looked healthy in their then home state of Illinois. Two years later Odesina was born in Iowa, she was screened and it was discovered that she also had sickle cell disease.<\/p>\n

\u201cWhen I was younger, I had many pain episodes from my sickle cell. But there were times too that I would be just perfectly fine,\u201d Odesina recalls.<\/p>\n

\u201cWe were very active children. I participated in sports. I ran track, played basketball, and soccer too, plus dance, marching band, jazz band, and played the flute and piano,\u201d she says. \u201cI still had a chance to go to camp too. I attended The Hole in the Wall Gang Camp in Ashford, Connecticut which our family is still involved with periodically to this day.\u201d<\/p>\n

\"\"
Sola Odesina has been to over 30 countries ranging from Costa Rica to Maldives to Australia.<\/figcaption><\/figure>\n

Odesina adds, \u201cMy parents were big advocates of letting kids be kids -or if we couldn\u2019t do something fully, to do it with a modification. I\u2019m so grateful for my parents. They have allowed me to lead a semi-normal life, and as a kid with sickle cell disease I never knew what I was missing.\u201d<\/p>\n

But sometimes immediately after sports, her knee would hurt intensely or when jumping in a cold swimming pool she would immediately feel the pain in her legs and body.<\/p>\n

\u201cOur parents ensured that even living with sickle cell that we would be able to advocate for ourselves and others,\u201d she shares. \u201cWe tried out western and eastern medicines. In addition to very compassionate hematologists, nurses, sickle cell pain specialists who assured that we received quality care, we also had a psychologist when we were younger who taught us to think about our happy place of Candy Land during pain episodes. So we had a well-rounded team to manage our sickle cell, not just our body but our minds.\u201d<\/p>\n

She adds, \u201cMy friends have also been supportive and understanding, and have been there for me and they are extended family to me.\u201d<\/p>\n

Odesina is very grateful to UConn Health and its Institute dedicated to taking care of patients with sickle cell and also pursuing the latest innovations and clinical trial research<\/a> too.<\/p>\n

She\u2019s been cared for by UConn Health since before there was an established program for sickle cell for at least the last 15 years or more she says.<\/p>\n

\u201cThe sickle cell team at UConn Health are amazing. I am grateful to Dr. Biree Andemariam<\/a>\u00a0 for creating the New England Sickle Cell Institute,\u201d says Odesina.<\/p>\n

And sickle cell is never going to stop this avid traveler.<\/p>\n

\u201cI don\u2019t want to be bogged down by my disease. I am an avid traveler and I hope to see every country in the world,\u201d she says.<\/p>\n

Dr. Oladipo Cole<\/a> she says is an amazing new addition to the Institute team led by Andemariam, and so has been Dr. Genice Nelson<\/a>, in addition to all the sickle cell nurses and social worker.<\/p>\n

Odesina wants everyone to know two things this sickle cell awareness month:<\/p>\n

\"Longtime
Longtime UConn Health sickle cell patient Sola Odesina enjoying her trip across the pond to England.<\/figcaption><\/figure>\n

\u201cWe are people and we matter,\u201d she adds, \u201cAnd we have a voice!\u201d<\/p>\n

\u201cSickle cell disease affects so many people around the world. It can be treated, managed, and it must be. We have providers like Dr. Cole, Dr. Andemariam, and Dr. Nelson and their entire team who put in the time and effort into patient care, communication, and research.\u201d<\/p>\n

Odesina concludes, \u201cUConn Health\u2019s New England Sickle Cell Institute nurturing and care are enabling us to live a life that is full and that\u2019s worth living.\u201d<\/p>\n

She adds, \u201cMy faith has also impacted my life. I am grateful to God that I wake up every morning, to live another day.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"

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