Cathy’s Patient Story Managing HAE, Lupus, And MS

November 29, 2022 — Cathy has lived for 62 years with Hereditary Angioedema, and her husband Duane lives with both Lupus and Multiple Sclerosis (MS). Cathy and Duane spent most of their lives without medications for their debilitating chronic conditions. Cathy’s medication alone was very expensive — costing millions per year. But today, she is thriving thanks to financial assistance and those who graciously came to her aide.  

“Words cannot express how having medication can change how one lives with a rare disease,” Cathy explained. “Fear of dying eases; life takes on a whole different meaning. I can plan some small things in life without worrying about not being able to attend. The best part of having medicine is being able to give back to others. I haven’t been in the ER in nine years thanks to everyone who made this possible for me.” 

HAE, Lupus, and Multiple Sclerosis 

HAE is often caused by an imbalance of a specific protein called C1 Inhibitor, which acts as an anti-inflammatory in the body. When this protein is not balanced properly, it can cause tiny blood vessels to push fluid into nearby areas of the body, causing swelling. If swelling occurs inside of the body, such as the lining of the stomach or intestines, the symptoms can manifest in the form of vomiting, diarrhea, or extreme pain. Some patients have even reported having the following symptoms prior to swelling: non-itchy rash, skin tingling, skin tightness, fatigue, irritability, anxiety, or sudden mood changes. 

Lupus is an inflammatory disease caused when the immune system attacks its own tissues. It can affect the joints, skin, kidneys, blood cells, brain, heart, and lungs. Symptoms vary but often include fatigue, joint pain, rash, and fever. While there’s no cure for Lupus, current treatments focus on improving quality of life through controlling symptoms and minimizing flare-ups. 

Multiple Sclerosis (MS) is a disease in which the immune system eats away at the protective covering of nerves. The resulting nerve damage disrupts communication between the brain and the body, and this causes many different symptoms, including vision loss, pain, fatigue, and impaired physical coordination. Some people may be symptom free most of their lives, while others can have severe chronic symptoms that never go away. Usually, physical therapy and medication can help with symptoms and slow disease progression. 

Finding Financial Assistance 

Managing Cathy’s HAE was a challenge with the expensive cost of medication and insurance premiums. Cathy was referred to Accessia Health, and after applying for financial assistance, she received the best news she could have hoped for. 

“The lady told me on the phone, ‘We can pay your insurance premiums.’ I dropped the phone, and I started crying,” Cathy shared. “It was a Godsend. Do they realize how much money I’m going to have for bills, for food, for medicine, for essentials? It was unbelievable!” 

Then, the Patient Service Representative informed Cathy Accessia Health might be able to cover the cost of the medication as well. Cathy was dumbfounded over the support her and her husband were about to receive. 

“We can maintain the house; we can stay in this house,” Cathy said. “Because of what you guys do, we can stay here, we don’t have to go into a home. I can care for him because you guys cover my copays, and I can stay healthy and take care of him.” 

Giving Back and Giving Hope 

Providing financial assistance to patients like Cathy and her husband wouldn’t be possible without generous support from caring people like you. 

“You want to change someone’s life?” Cathy asks. “Every penny, every dollar — you don’t realize what that’s going to give back to someone that’s living with a rare condition that could end up killing them without medicine.” 

You can change a patient’s life by donating to our patient programs. Click here to make a gift today. 

  

*Please consult with your healthcare provider or seek professional medical treatment if you have any medical concerns. Please do not disregard any professional medical advice or take any delay in seeking medical treatment based on anything you may have read in this blog, on this website or in any linked materials contained within. Thank You.