Little Falls mother searching for answers after rare autoimmune disease diagnosis
Systemic Scleroderma is a life-threatening disease with no cure but it is not on the list of chronic illnesses.
Begging for an answer, all that is found is the mystery of her own mortality.
Diagnosed just four months ago, Desiree Chaves is still feeling the shockwaves that rocked her to her core. Having spent her 38th birthday in hospital, she was told in January that she had Systemic Scleroderma, a rare autoimmune disease with no cure. Searching under every rock and in every hidden corner, Desiree is staring into a void bereft of meaning or guidance.
The mother of one’s medical issues did not begin with the life-changing diagnosis as it was the culmination of a lengthy pursuit. Initially diagnosed with lupus, vitamin D deficiency, anaemia and fibromyalgia, further testing and visits to specialists concluded Systemic Scleroderma to be her fate. The disease has two classifications with Scleroderma being the contraction of the skin and the connective tissue of joints, whereas Systemic Scleroderma affects the connective tissue of organs and blood vessels.
Desiree has been experiencing the symptoms for years prior to the diagnosis, having been treated for depression and anxiety. On a conveyor belt of medications from multiple doctors, nothing seemed to work until she found herself in hospital. Lethargic, unable to breathe and thinking she was having a heart attack, Desiree was rushed to the emergency ward.
“Dying used to be my biggest fear. Today, that biggest fear is suffocating,” said Desiree, recalling the harrowing experience.
Active and outgoing just a few years ago, life now has become an empty shell of a lonely existence.
“I have no life; everything has changed. I stay away from the shops, as I am afraid to be around people,” said Desiree.
She still travels to work most days but driving takes a toll on her knee joints and she spends the day in isolation as her ongoing chemotheraphy has compromised her immune system.
Attempts to get adequate treatment have proved frustrating as Systemic Scleroderma is not on the list of chronic illnesses that all medical aid schemes are required to cover. Her condition has also left her unable to get life cover or any financial safety net, leaving her with limited options. Still hoping to put her 19-year-old son through tertiary studies and faced with the possibility of medical boarding, she says she is between a rock and a hard place.
Desiree feels that placing Systemic Scleroderma on the chronic-disease list would be the golden ticket to managing her condition. This would take coordination between the medical profession and insurance authorities but Desiree feels that a condition of this magnitude requires more research, sympathy and compassion.
“I don’t think there is enough awareness, I don’t think the government is even aware of the disease. I feel like I’m being treated like I am already dead. It feels like I am just waiting to die,” she fumed.
Highlighting her daily uncertainty, she added, “I can have a heart attack tonight or I could live for 20 years, that is what doctors told me. I just have to be prepared.”
Treatment would equal emotional security and peace of mind but will be needed for the rest of her life. The types of tests and procedures are incredibly costly, but helping Desiree fund her treatment will be contributing to her search for answers.
Should anyone be able to assist, visit her BackaBuddy page.
