A doctor here in Charleston, South Carolina diagnosed her with DM in February of 2017 and because the disease is so rare and not many doctors know much about it, she felt it was necessary to get a second opinion and to look for a doctor that treats a lot of patients with Dermatomyositis. They quickly discovered the John Hopkins Myositis Center in Baltimore and were able to get her an appointment set for May 2017. They all knew that Heidi could not wait that long and so they sent pictures of her skin to the head doctor there and John Hopkins called and wanted to see her immediately. Two days later, Heidi and her parents flew to Baltimore and did lots of testing and even shed tears with the doctor. They told Heidi they had never seen such a severe case in regards to the skin rash. At that time, this disease was not in her muscles. From February until mid-September, Heidi was taking more meds than you could keep track of, going every few weeks for IVIG infusions and suffering in a way that you could not imagine. All of you that know Heidi know that she loves the outdoors; the beach, the boat, the pool, soaking in the sun, all of it! She has not been able to do any of that for the last 10 months because you are not allowed in the sun with this disease.
Heidi started to see a little improvement in her skin over the summer and was determined to start teaching school again in August and she did! We were so proud of her although we were concerned that she was doing too much. Not only was the disease hard on her skin, she lost most of her hair as well. None the less, she covered up her skin, put on her head scarfs or hats and gave all she had to her beloved students. Unfortunately, she wasn’t able to even get a month of work in before another “flare up” invaded her body. This last flare up did not only come with itchy red skin, exhaustion, swollen eyes, depression and anger but it came with a new symptom that we prayed would stay away from her. The disease had gotten into her muscles and she was having trouble swallowing, lifting her arms, walking and doing any of the normal activities that we all do every day. She got these huge painful lumps under her arms and was diagnosed with another disease called Mondor’s Disease. After a few days off for Hurricane Irma, she headed back to work even though we knew it was probably not a good idea. She had to come home from work that day because she could not make it up the stairs. And so the appointments and testing started back up and she demanded answers from her doctors here in Charleston. As great as these doctors here have been, they just didn’t have answers for Heidi. They don’t treat enough DM patients to know how to properly treat the disease.
Luckily, Heidi was able to get in touch with John Hopkins again and met with them on October 5, 2017. They did lots of testing on her again and she will have to have more tests done in Charleston once she gets approval from her insurance company. Unfortunately, insurance companies slow the process way down! The doctor took her off all of her current medications because she says that they are not working. Although I know Heidi must feel like this is such a setback that she has to start all over, we know that it is a blessing that she was able to get back to John Hopkins and that the doctor feels confident that they can get her better! The chemo drug called Rituxan that the doctor wants to start Heidi on is apparently very hard to get insurance companies to approve, but the doctor feels confident that she can get them to approve it. She said that 83% of people that take this drug get much better!!
They suspect that Heidi has a rare antibody that only about 2000 people in the world have and John Hopkins is currently treating 10 of those people. They are doing extensive testing to find out for sure and they should know next week. If she does have this SAE antibody, that can cause cancer, she will need to be tested regularly for all types of cancer. We will continue to make updates on this page (and Facebook) on how Heidi is doing and also test results.
Many people have asked how they can help Heidi so we were happy to set up this Go Fund Me account for this family, that we all love and respect so much, to help with medical expenses, travel expenses and anything else they might need while Heidi is out of work. The love and support that all of you have given Heidi means more than you will ever know. She feels so blessed that she has all of you in her life. The road has been so hard for all of them and we pray that God will heal Heidi. Please pray that the insurance company will approve all the needed medications and approve all the additional testing that Heidi needs. Please also pray for Vinny and their boys, Luke & Jake, her parents, Jackie & Bill, her brother, Bill and his family and all of Heidi & Vinny’s friends and families that are helping to support and care for Heidi. Pray specifically that they will have faith and the strength needed to help care for her and also encourage her that she CAN beat this horrible disease!
"Be strong and of good courage. Do not fear nor be afraid of them; for the Lord your God, he is the one who goes with you. He will not leave you nor forsake you."
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