A ‘SNOWFLAKE WARRIOR’ Living with Myasthenia Gravis: Hannah’s story

A ‘SNOWFLAKE WARRIOR’ Living with Myasthenia Gravis: Hannah’s story

By Yvonne N. Gichuru

Meet Hannah Wambui, 56. Her son, Martin Muturi, 33 describes her as a prayerful and committed Christian who is very active when it comes to children’s ministry.

Hannah started experiencing pain in her legs in 2012 when she sought medical attention. She was then diagnosed with Arthritis from a local hospital, given medication, and later felt fully recovered.

However, in 2019, she again started experiencing similar symptoms but this time, her hands and legs felt weak and she started falling. “It was as if I had no strength,” she said.

According to her son, Mr. Muturi, she started developing complications such as drooping eyelids to the point he thought it was an optical issue.

“She was experiencing muscle weakness; she could not stand for long. Her bladder got weak and this was when it became alarming and so we concluded it might be a serious medical condition,” he said.

She was then taken to a nearby clinic then referred to Kenyatta National Hospital.

Ms. Lucy Kimemia, Nurse ManagerMedical Critical Care Unit, KNH said that upon examination and testing, Hannah was diagnosed with Myasthenia Gravis – a chronic autoimmune disorder in which antibodies destroy the communication between nerves and muscle, resulting in weakness of the skeletal muscles.

“Myasthenia gravis affects the voluntary muscles of the body, especially those that control the eyes, mouth, throat, and limbs,” she said.

It is often called the snowflake disease due to the fluctuating symptoms experienced from one person to another.

On admission to the Medical Critical Care Unit (CCU), Ward 8A, a tracheostomy – insertion of a tube through the trachea to help one breathe was done to manage the condition.

“Hannah was in and out of mechanical ventilation. “Nonetheless, prolonged use makes one irritable therefore fixing the tracheostomy tube made use of the mechanical ventilation more comfortable for Hannah who was eventually able to talk.

Initially, she was on a nasogastric tube for feeding and later on a Percutaneous Endoscopic Gastrotomy (PEG) tube which was inserted to enable her feed orally,” said Ms. Kimemia.

A section of the medical team from the KNH Critical Care Unit - Ward 8A

PHOTO | STEVE NDUATI

According to Valerie Maleche, Senior Nutrition Officer, KNH; Hannah was an alert patient. She was able to communicate verbally and express her concerns clearly, unlike most patients in the critical care unit who are always unconscious.

“This status made it easy for me to provide quality nutrition care. She was on enteral feeds - nutritionally complete feeds that are delivered directly into your stomach or small intestines via a tube.

These feeds were alternated by enriched blended feeds from our Therapeutic Feeds Production Unit in the Main Kitchen.

Every day after reviewing Hannah during the major rounds, her feeding regime would be altered and customized to her nutrition needs which were determined by her current lab works and anything discussed by her primary doctors and nurses,” Ms. Maleche added.

Hannah always believed that one day she would be out of the critical care unit. “Patients are sometimes in denial but for Hannah, she accepted her condition and believed she could get healed,” said Ms. Kimemia.

She emphasized that healing needs a lot of support from the medical side and family too such as in Hannah’s case.

“Hannah was very cooperative. She eventually came out of the unit without bedsores and within a few days was even going to church. One thing about Hannah, she never gave up. She is very happy and appreciative,” she added.

In preparation for discharge, Mr. Muturi – Hannah’s son was given intense nutrition counseling so that there could be continuity of nutrition care at home.

“I provided them a detailed meal plan and advised on recommended feeds with regard to her diagnosis. A few weeks after discharge, Hannah was already eating solid food as opposed to the blended feeds. For me that was a great milestone achieved in a very short time,” said Ms. Maleche.

“There was a lot of teamwork in the critical care unit from the physiotherapists, occupational therapists, doctors, nurses, nutritionists to the supportive staff who all played a tremendous role for Hannah to be what she is today,” she added.

Mr. Muturi commended KNH for being helpful throughout the whole process.

“They supported me by providing information on her progress. Although it was physically, financially, and spiritually weary, I did the best I could to assist,” he said.

Hannah is thankful for her son who was her main support system.

“My son used to be in the ward by 5:45 am, leave for work at 7 am then come back at 5 pm to check on my progress and make enquiries,” she said gratefully.

She also remembers the KNH prayer team coming to visit and this gave her the strength to have hope she would recover.

Currently, there is no known cure for the disorder. “Most patients with Myasthenia gravis don’t have a good turnout but there are many treatments that can make it easier to manage life,” concluded Ms. Kimemia.

Hannah often comes to her clinical appointments for follow-up in the KNH Neuro-clinic.

“On Hannah’s first outpatient appointment, I was thrilled to see her walking and looking much brighter when we met. It is so fulfilling to see a CCU patient discharged and in good health,” concluded Ms. Maleche.

Hannah encouraged proper dieting as she says that this too played a major role in her recovery. She concludes the interview by noting that Psalms 23 was where she drew her strength to overcome the disease.

“I claimed God’s promises in Psalm 23 that we would have no lack and that we would lead healthy and fruitful lives. I feel healed and contented,” she concluded.

Head of State’s Commendation (HSC-Civilian Division)

Administrative Officer, Transport, Mr. Fredrick Omondi, has been conferred with Head of State Commendation (HSC-Civilian Division) by the President of the Republic of Kenya, Uhuru Muigai Kenyatta (EGH) via The Kenya Gazette notice publication Vol. CXXIII-No. 255 dated 17th December 2021.

Hongera!