Resilience of youth beats rare illness | Latest news

Resilience of youth beats rare illness

Patient celebrates 18th birthday at Pinderfields hospital after spending 10 months as an in-patient, after becoming increasingly unwell with an unknown, rare disease. 

The average patient spends 4.5 days in hospital. Shugofta Kosar, who was 17 at the time, was first admitted to Pinderfields hospital in October 2019 when she was very sick with an unknown illness. She became increasingly ill and was admitted to ICU on Friday 13 December, where she required a machine to help her breathe, she was there for 6 weeks. During this time it became clearer to the doctors that she was suffering with an autoimmune disease affecting her bowel, called lupus.

Lupus is a long-term autoimmune disease in which the body’s immune system attacks normal, healthy tissue. Symptoms include inflammation, swelling, and damage to the joints, skin and organs.

It was a long road to recovery for Shugofta, she required a full spectrum of care involving multiple sectors of our Trust. When she was first admitted in October she was assessed by medical teams, then looked after by our intensive care team, external transfusion services, specialist feeding teams, rheumatologists, gastroenterologists, bowel surgeons, occupational and physiotherapists, not to mention nursing teams on three separate wards and input from radiologists, therapies teams including physiotherapy, and psychology, our nutrition and total parenteral nutrition (TPN) were involved throughout her admission.

Shugofta underwent three bowel operations and multiple other investigations in radiology and gastroenterology.

Following her diagnosis, Shugofta required therapy to suppress her immune system and multiple episodes of plasma exchange; a continuous cycle where a patient’s blood is removed and put through a filter to remove certain proteins before being put back in to their veins. She had to receive all of her nutrition directly through her veins from December up until the end of June.

In the beginning of the Covid-19 pandemic the Trust’s priority was to keep Shugofta safe. Discussions were had on whether it would be best to move Shugofta to a different hospital, but given the complexity of her case and the amount of services that were involved in her care, the decision was made to keep her at Pinderfields hospital, which she was now familiar with. Thanks to the excellent care of staff and precautions taken by her parents, who were allowed to visit her under strict conditions, she thankfully was unaffected by this.

Due to how poorly Shugofta was, she lost her ability to walk. As her condition improved she was able to receive greater input from therapists to regain her strength and learn to do simple day-to-day tasks again.

On Wednesday 10 June, Shugofta celebrated her 18th birthday at the Trust.

It is through Shugofta’s sheer determination and resilience of youth that she overcame this illness with the help of the Mid Yorkshire Trust network who became entirely invested in her wellbeing and recovery. The communication of our staff and the capability to cohesively work together, and with outside organisations, to determine the best care for Shugofta is a brilliant example of the high standards the Mid Yorks Hospitals NHS Trust strive to achieve every day.