Andrea’s story

Who Andrea was

Andrea Hughes was a devoted wife, a loving daughter, a concerned sister, a doting aunt, a loyal friend and a lupus warrior. Andrea loved helping people, had a strong sense of justice and was always willing to take on a cause. After a long search for the cause of her wide variety of illnesses, at age 27 she was diagnosed with lupus. As with many lupus sufferers, Andrea had no former knowledge of this disease and how to cope with it. She struggled with body pain and needed frequent pain relief injections. Andrea showed signs of kidney disease and after numerous tests, it was confirmed that she, in fact, had lupus (SLE) which impacts the kidneys. This news was overwhelming. She was told that she would never be able to have children because of extensive kidney damage.

Living with Lupus

In order to manage her condition, Andrea took an average of 22 tablets a day and supplements. She was exhausted and nauseous most days, experiencing abdominal cramps and various other symptoms. Daily tasks were challenging. There were many side effects from the medication and, as her flare-ups increased, she was often admitted to the hospital for pain control. In so many ways, Andrea was a silent sufferer.

It was difficult for her to live with a disease that seemed invisible to the outside world. It was difficult to plan family occasions which often ended with Andrea being rushed to the hospital yet again. Mounting medical bills and serious concerns about whether or not she could maintain her job were a daily concern and a source of major stress.

Dark times

During 2017, after feeling reasonably well for a while, the lupus flares became unmanageable and the trauma of hospitalisation left Andrea struggling with anxiety. Despite her ever-worsening condition, she always put others first. She would insist on being taken to work, even if it meant lying on the back seat of the car until she got there. What a brave heart! Few people knew what a huge effort it took for her to continue being a loyal employee.

Andrea loved the hospital staff and they, in turn, loved her presence, her friendly disposition and bubbly nature. Hospital staff became an extension of her family. Over time, Andrea developed the burning desire to help other lupus patients, especially those who were unable to afford private medical care. Despite having private medical care, Andrea knew too well the financial stress which impacted lupus sufferers, no matter what their financial status is. She knew all about the trauma and the daily psychological battles.

Beginning of a dream

Despite her physical and psychological pain, Andrea was always passionate to help those in need. She wanted people to know that she understood the stress, the trauma, the worry and so much more. Her dream was to qualify as a Medical Social Worker, specifically helping patients to re-adapt and rehabilitate when they return home.

In September 2017, while in ICU for a few weeks with various complications, Andrea had a seizure which resulted in her being in a coma for seven days. Many prayed for her and, as a family, living with her silence was very painful and a time of great uncertainty. Andrea was the life and soul of many gatherings – she really was larger than life itself. On Day 7 she woke up from the coma and there was much rejoicing. She needed intensive rehabilitation to re-learn the basic things we so take for granted such as talking, walking, feeding herself and brushing her hair.

Her fighting spirit never faltered, nor her love for her family, the hospital staff and her doctor. Even in her pain, Andrea would make him smile.  She was determined not to give up:- her progress was astounding and soon she was released from ICU to the general ward. Pain still plagued her and daily dialysis was still necessary. Yet her recovery continued and she was subsequently transferred to a rehab centre where she received extensive physiotherapy to enable her to function in her home environment.

Saying goodbye

On a Sunday evening in October 2017, after a day spent in much joy, lunching with her Mom, sister, nephew and nieces, sharing tender moments with husband Mark, Andrea had a stroke, something that is not unusual for lupus patients. Little did we know as a family that Andrea would never wake up again. Andrea went to be with her Saviour Jesus Christ on 25th October 2017.

Andrea’s Gift

Andrea was a lupus warrior, never giving up even when some days felt unbearable. She was a leader who wanted fellow lupus patients to know that she understood that at times life would seem unfair, overwhelming and daunting. She knew that even people who love you the most may not understand because it is such a challenging disease on so many fronts. She wanted people to know how much she cared and understood the fears, the anxiety and the physical and emotional struggles. Through all this, her mantra was “I will not be shaken”.

Andrea never stopped being a dedicated wife, a loving daughter, a supportive sister and a doting aunt. Andrea is no longer physically with us but her spirit lives on, encouraging you, as a lupus sufferer, to make the most of life’s journey and to never give up!

From here the Andrea’s Gift Bag was created and it is a gift of love from one Lupus Warrior to another!

Never give up – even on your darkest day!