Healthcare is always a hot button issue. We often take it for granted. It always amazes me when I'm talking to a fellow Leukodystrophy family and they haven't heard of CHOP. We learned about CHOP a couple months after Jordyn's diagnosis. We had been seeing a local neurologist who diagnosed Jordyn and told us to "wait and see" what happens. They were not at all proactive in her care and tokd us we would be lucky if she lived a full life. As a child of someone who works in the healthcare profession, I refused to believe tjis was quality healthcare. I immediately reached out to Facebook groups to finds answers and get help in understanding this disease. I was told that a research study was taking place at the Children's Hospital of Philadelphia Leukodystrophy Center. Going there for the first time in February of 2016, I was BLOWN AWAY at the care we received. We were told that there is hope and "we are going to do everything we can to save your daughter." CHOP is a hospital we look forward to visiting. It's a place of hope, a place where you truly feel like family. the Leukodystrophy team is absolutely the best in the nation (in my opinion). They make decisions together about every child they see. There is no miscommunication and no blurred lines. They come together for the sake of every child they meet and make decisions, as a team, that are in the child's best interest. If you haven't done so, you really need to take your child to Philly. The care you receive at CHOP will no doubt pale in comparison to other care you have received thus far. Dr. Waldman and her team are absolutely incredible. They are some if the most compassionate people I have ever met!
3 days ago
Adult Refsum Disease is an ultra-rare Leukodystrophy. Global DARE Foundation was recently founded to support individuals with Adult Refsum Disease. Our mission is to promote world-wide awareness and better quality of life for all who are diagnosed with Adult Refsum Disease. You can find out more about Adult Refsum Disease at our website: https://www.defeatadultrefsumeverywhere.org/ We are hosting our first conference in London on May 15, 2020. We can use help finding more patients. Please share with anyone that may benefit. We will also be at the United Leukodystrophy Foundation conference in June.