Rare disease sees man push through pain to bring awareness

Sathish Telukram is a high achiever and perfectionist who has forever aimed to be the best at whatever he does.

The father of three was diagnosed with Dercum’s disease, a rare disorder characterised by multiple, painful growths of fatty tissue (lipomas) in May 2021, and his life changed drastically since then.

There are three people registered with Rare Diseases in South Africa with this rare disease, making Telukram the fourth person in SA currently suffering from this illness.

Dr Francis Dercum first identified the disease in 1892, over 100 years ago. There are currently only 200 000 people identified globally with this rare disease. However, many more may have it but do not know as yet.

Despite suffering from this rare disease, Telukram will stop at nothing to bring much-needed awareness to the community. His wife, Nicole, owns a food truck and sells food to the community to raise funds for Dercum’s disease research.

All proceeds go to funding their research and raising awareness about the condition.

Stop at nothing

Telukram has always been competitive and highly motivated to do great things.

Growing up, he was selected to play golf at the Durban Country Club even though nobody in his family or school played the game. He was also one of the best cricketers in his school’s cricket club.

“I also did very well at football and was asked to join the local soccer club. I was the only participant who entered the second-round Mathematics Olympiad at school. And I was also the only bright learner who beat the principal at chess in primary school,” he explained.

Telukram has always been inclined to learn new things and was never one to take medication because he thought it was harmful.

“As I started getting to my teenage years, I began noticing lumps on my arms and legs. I asked my parents about it, and they said they had them as well, and they were just lumps. As I got into my adolescent stage, the lumps started getting bigger, and I asked the doctor about it. He told me it’s just fatty tissue and that many people had it,” he said.

As he grew older, the lumps on his arms grew larger, “Like the size of a golf ball”. At that stage, he was a chartered accountant article clerk.

After consulting a GP, the doctor said it could be Recklinghausen’s disease, which he then told a plastic surgeon about, who brushed it off.

“At 33, I started experiencing pain from the lipomas. It affected my productivity. The doctors told me it was nothing to worry about, so I blindly trusted their advice. Three years later, the pain became unbearable, and I often experienced pins and needles. I found a specialist neurologist who did a battery of tests,” Telukram said.
She ruled it out as being lipomatosis.

“However, lipomatosis does not cause the symptoms I was experiencing. She then decided to do research for a month and found the correct diagnosis.”

She then diagnosed him with Dercum’s disease. After getting his diagnosis, Telukram decided to do his own research.

Misdiagnosis

He found that many people experienced the same symptoms but didn’t know what they had.

“This led me to believe that many people don’t know what illness they have until they get a second opinion. Upon doing further research, I found Doctor Karen Herbst, based in California, US, who seems to have done the most research and studies on Dercum’s disease,” Telukram explained.

We contacted Herbst and had a video call with her.

Telukram said Herbst confirmed that most doctors globally have no idea what Dercum’s disease is and often misdiagnose their patients because of it.

“She also confirmed it’s a genetic hereditary disease that can affect your future generation. She also said any trauma or dramatic life event can cause this to start in an individual. I found out that some of my family members also had or have been experiencing similar symptoms,” Telukram explained.

Biggest challenges

Life as Telukram knew it has completely changed.

“I can’t play with my children as I would like to, driving becomes a difficult thing to do, and even just small daily tasks like getting out of bed become a mammoth task. The lipomas put pressure on my nerves, so I can’t do much. I can’t even lift my hands above my shoulder without feeling pain,” he said.

According to Telukram, his former employer thought he was lying after his diagnosis.

“He dismissed me for not doing my work properly and charged me with insubordination because I had a big argument with him. I cannot work much anymore since 2021. I was in extreme pain. After having some lipomas removed, the only treatment I can pursue now is pain management,” he said.

He has tried several options, but unfortunately, none have brought him any relief.

The only management he uses is strong schedule seven pain medications.

“However, I fear for my kidneys now. Without the medication for pain management, I can’t function properly daily. Spending more time with my wife and children and the rest of my family brings comfort and joy. I’m thankful for my wife’s unwavering support,” he said.

‘More education needed’

Telukram believes there is a lack of knowledge when it comes to understanding Dercum’s disease as a whole.

“It is greatly misunderstood as just lipomas or lipidemia. People don’t understand you’re in pain and accuse you of being lazy. There is much discrimination regarding Dercum’s disease sufferers, even by doctors who have a misconception of the disease and think you are faking your symptoms,” he said.

He said those diagnosed with the same condition should have alternatives when seeking clarity.

“I believe God is working in my life right now, putting me where I need to be to help others. Even though I have been going through all this, I still manage to push through the pain and have achieved a lot in my life on my own through it all. I have accomplished what I wanted to even though I have this disease,” he said.

Should you wish to donate to Telukram or his cause, contact Nicole Telukram on 074 454 5848 or dercumsfamily@gmail.com