Ashita's Battle with Lupus

Hello. My name is Ankita Suna. It’s been almost two years since I last wrote on behalf of my youngest sister, Ashita Suna, who struggles with Systemic Lupus. A lot has happened in these two years. With the help of our last GoFundMe Fundraiser, we were able to bring our mother to America to help take care of Ashita for about half a year. The improvement of Ashita’s daily life was evident. However, at the same time, after a year of similar lab results, her Rheumatologist began suspecting that Ashita’s Lupus had started to affect her kidneys and referred her to a Nephrologist. We were worried upon hearing that this could mean something as serious as needing a kidney transplant. The kidney biopsy confirmed that Ashita now had a second type of Lupus, Lupus Nephritis. It was discouraging, but since it was still level one, we hoped it could be kept at bay with her current medical care routine.

In the Fall of 2021, Ashita moved to the Boston area, where she started college. During the summer, we tried our best to set up her medical care beforehand. However, the move still caused a gap. We had the wrong type of insurance and once again, Ashita had to navigate the complicated waters of insurance and doctor hunting. For six months she had no contact with a Primary Care Physician, Rheumatologist, Nephrologist or any of the other doctors she needed to have regular checkups with. This also led to a gap in her regulating medications. This, coupled with the regular stress from college classes and life, began taking a toll on Ashita’s body.

Ashita’s college tried to accommodate her medical needs. For example, they did their best to let her have a single room as there are many days when Ashita is just unable to do routine cleaning. She didn’t want to stress out her roommate and therefore, get stressed out herself. However, there was an oversight; they put her on the third floor of a college dorm with no elevator. Going up and down flights of stairs every day puts a lot of unnecessary stress on her joints. Thankfully, many of Ashita’s teachers were conscious of her everyday struggles and worked with her to continue to do well in their classes.

However, since Lupus is an invisible disease, Ashita’s mental well-being became negatively affected due to the lack of understanding from those around her. She grew tired of explaining her unexplainable and seemingly reasonless fatigue. Her depression understandably worsened due to her physical limitations and led to a lack of motivation to do anything. Another side effect of Ashita's Lupus is brain fog, which affects her memory and attention span. Trying to juggle school, her worsening physical and mental health, social life, Lupus/chronic disease-uneducated individuals, etc. became too much for Ashita to handle. This pushed Ashita further into herself, making it harder to reach out to her community for help. However, one thing became clearer and clearer to her; she could not fulfill her dream of being an average college student with a seemingly normal full course load.

Finally, this January, after months and months, Ashita finally met with her new Rheumatologist. By now, she's already grown frail, her steps were slow, she struggled to breathe, and those masks we have to wear every day didn't help at all. Ashita was losing so much hair that just taking it off her jacket made it look like a crime scene on the floor of her doctor's office. Her new Rheumatologist was very concerned by the cause of the hair fall, suspecting a third kind of Lupus for Ashita. We are still waiting for the results.

Two weeks ago, just when we thought we could finally let our guard down, Ashita's angry appendix demanded to be free, resulting in emergency surgery. After the surgery, it would have been impossible to send her back to her dorm room due to her already weakened state plus the surgery after-effects. I requested a family friend to let us stay at their home while I took care of Ashita. Ashita's regaining her strength, but she's now missed a lot of school days.

Ashita's also come to terms with the fact that she can't continue being a full-time student. Stress is an enormous trigger to her health. Taking more than 1 or 2 classes a semester will be difficult. She knows and understands that her health comes first. Due to complications with her FAFSA, she has to finish this year at her current college. However, she can't continue staying in her dorm room because she needs constant care. Since our parents are full-time missionaries in India, it is difficult for them to dispatch themselves for such emergencies. After discussion with our parents, we've decided that I need to move from Chicago to Boston for at least a couple of months to help Ashita out. For our long-term care plan, we hope our mother will be able to travel from India to Boston to help take care of Ashita. We've decided to stay in the Boston area so that we don't further disrupt any medical care we've already started here. However, we need help with this transition.

I've been unable to work for the last two months as I dedicated my time to taking care of Ashita here in Boston. We are currently struggling with $2,000 of overdue fees. We would need another $2,000 for my move to Boston from Chicago. Flying from India to Boston, our mother's plane ticket would cost another $2,000. The most significant expense would be renting an apartment close to Ashita's doctors and college for the next three months. We would need $10,000 for this and daily costs such as food, gas, Ashita's medication and any uncovered doctor appointment fees. In total, we'd need $16,000 for this major change in our lives. I'm praying and hoping that I will get a job in the area within another month or so, once our mother can come and take over care of Ashita.

Lupus really does affect each patient differently. Some may reduce their symptoms with medication and live a relatively normal life. Others may have to fight day after day just to keep the pain manageable for the next few short years that they live. We are praying that this step we will take as a family will help improve Ashita's chances as she continues to battle against her Lupus. Please prayerfully consider our request. We would appreciate any help you may be able to provide: by giving, sharing and praying. Once again, we would like to say thank you to all those who helped us last time through our time of need. And we would like to thank in advance those who have taken the time to read this post as well.

Sincerely,

Ankita and Ashita Suna