The fight of her life

Since a young age, Robin Huiras and members of her family are constantly battling a rare disease. But her mission is to always raise money for ..

Submitted photo
A picture of Linus and Leonard Huiras in their early 20s. Both brothers died of symptoms related to Dyskeratosis Congenita, a rare hereditary disease that affects a small number of people worldwide.

Submitted photo A picture of Linus and Leonard Huiras in their early 20s. Both brothers died of symptoms related to Dyskeratosis Congenita, a rare hereditary disease that affects a small number of people worldwide.

Robin Huiras decided long ago that rather than sit and feel sorry for herself, she could do the exact opposite and raise awareness for the rare disease that she was born with.

Huiras’ life changed at age 10 when she received the news that she had Dyskeratosis Congenita (DC), a disease that affects less than one in a million people worldwide. It’s a hereditary disease that was passed on to her from her father’s side of the family.

The daily battle of fighting a rare disease that is capable of destroying the human body leaves her with few options: Battle the disease quietly or help educate as many people as she can and raise money to better research it.

Huiras, who turned 40 this past March, is a 1995 New Ulm Cathedral graduate. Her dad, Linus Huiras died in June 1991 at age 43 from complications of the disease. Her uncle and Linus’ twin brother Leonard died in 1985 at the age of 37, also from complications of the disease. Her cousin, Joe Huiras (Leonard’s son), a 2002 graduate of Sleepy Eye St. Marys, also is battling the disease.

She is passionate about educating others about the disease. She became involved in a non-profit charity called Dyskeratosis Congenita, Outreach, Inc. and in 2013 she became president and helped the group do a number of activities, including sponsoring family camps and publishing a medical guidebook on the disease.

Submitted photo
Cousins Robin Huiras and Joe Huiras together last December. Both have Dyskeratosis Congenita, a rare hereditary disease.

Submitted photo Cousins Robin Huiras and Joe Huiras together last December. Both have Dyskeratosis Congenita, a rare hereditary disease.

She helped the group raise money and this year, for the second year in a row, she is organizing a golf tournament at the Sleepy Eye Golf Club and that will be held on Aug. 19. Last year the tournament raised more than $7,000 for the group and she’s hoping to double the size of the tournament from last year.

About the disease:

Raising awareness for DC is Huiras’ main goal. Those with the disease usually have an increased chance of developing several life-threatening conditions, including disorders that impair bone marrow function. These disorders disrupt the ability of the bone marrow to produce new blood cells.

While the disease is capable of affecting many organs throughout the body, areas that have high rates of cell reproduction are mainly affected.

“A lot of people think of it almost as an aging disease, where our aging process for our skin and our organs are accelerated,” Huiras said. “People that have DC a lot of times have bone marrow failure because our blood cells are one of the areas in our body that reproduce really quickly. Ninety percent of people that have DC have bone marrow failure.”

Submitted photo
Golfers in last year’s Huiras Golf Tournament Fundraiser in Sleepy Eye. The tournament raised more than $7,000 for Dyskeratosis Congenita research.

golf tournament group photo cutline
Participants in last year’s Huiras Golf Tournament Fundraiser in Sleepy Eye. The tournament raised more than $7,000 for Dyskeratosis Congenita research.

Submitted photo Golfers in last year’s Huiras Golf Tournament Fundraiser in Sleepy Eye. The tournament raised more than $7,000 for Dyskeratosis Congenita research. golf tournament group photo cutline Participants in last year’s Huiras Golf Tournament Fundraiser in Sleepy Eye. The tournament raised more than $7,000 for Dyskeratosis Congenita research.

They are also at higher than average risk for blood cancers and have a higher risk of developing other cancers, especially cancers of the head and neck.

“Oral cancer is huge, different blood cancers, different lymphomas can happen,” she said. “Scientists are interested in researching the disease because it can tell them a lot about the process of cancer.”

Huiras noted that there are no cures for many of the complications, but there are some treatments that can slow the progression.

“A lung transplant or a bone marrow transplant can be a cure for a symptom, but there is no cure for the disease,” she said. “Scientists are really interested in studying it, especially because of this concept of aging.”

Huiras said that the diagnosis is usually made early on in a person’s life. Something as simple as frequent bloody noses can be a warning sign.

“Usually what happens is people get anemia and most times it happens when a person is a child,” she said. “There are cases when people find out when they’re an adult, they just have less severe variety of it. Kids might get bloody noses a lot, or kids might just get sick all the time and a lot of patients have poor immune systems.”

Her own personal battle:

Huiras is no stranger to the complications of DC. Having battled the disease her whole life, she’s had her fair share of struggles that she’s encountered, none of them being an easy fix.

She started having chronic headaches at age 10 and so she went to Mayo Clinic and they did a bone marrow biopsy. There, they made the diagnosis of DC after seeing her cells were abnormal.

Despite having the disease, her teenage years were fairly normal, but she did have a few problems. She started taking prednisone daily when she was 17.

“I bruised easy and my biggest thing was I couldn’t run,” she said. “When we did the mile in gym class, that was the hardest thing for me to do.”

In 1999 at the age of 22, she had an internal bleeding episode and she nearly died before she finally got to the hospital. This was a life-changer for her and she knew she had to make better decisions if she was going to continue to battle the disease.

“I wasn’t taking care of myself and I wasn’t making the best choices,” she said. “I did finally go to the hospital and they were surprised I was walking and still alive. Then in my 20s, I was actually transfusion dependent, so every two months I’d have to go in and get a liter of red blood cells.

She was prescribed anabolic steroids and the drugs helped her depleted bone marrow make red blood cells for a short time, but eventually those stopped working.

In December of 2005 at the age of 28 and out of options, she had a stem-cell transplant. A younger brother, who is not affected by the illness, was her stem cell donor.

She has two children and neither have DC. Her first child was born in 2008 and her second in 2012. In 2010, she had eye tear duct surgery and in 2012, she started having mild hip pain. This led to eventually having her hip joints replaced, one in January of 2017 and the other in April of 2017.

Robin’s battle is far from over. But she’s doing fine and she’s turning her attention again to helping bring awareness to the disease.

“I’m certainly much better than I was before,” she said. “I wouldn’t say I’m at 100 percent, but it’s so minor compared to the horror show that was going on before.”

More than just a golf

tournament:

Robin’s life isn’t the only in her family that’s been dramatically impacted by DC. Her cousin has been fighting symptoms of the disease for nearly a decade. A stem cell transplant in 2012 at Fairview University Hospital in Minneapolis has been followed by medical ups and downs. In November 2016 Joe was diagnosed with two forms of cancer.

Not only will the Huiras golf tournament bring attention to the disease, but it will directly supporting Joe and his family, which fits the mission of DC Outreach, Huiras said.

Many of the people competing are family members, but there are many others who attended last year’s event to help raise money for DC.

While that was satisfying for Huiras, it was also a time where friends and families gathered to share stories of her dad and uncle.

“It was like a family reunion, but what was amazing about it was we had never had an opportunity to really talk about my dad and my uncle Leonard in a way in that everyone was acknowledging of what they went through, and how it would’ve made them to know that their kids were working together to keep their memory alive,” she said. “It was special to have everyone in the same room to have everyone talk about their lost brothers and that was really awesome.”

Some of the symptoms of

Dyskeratosis Congenita

• Skin, nail and mouth changes: Abnormal dark discoloration of the skin, nails may fall off, white, thickened patches of on mucous membranes of th mouth (oral leukoplakia).

• Bone marrow failure: Individuals can develop bone marrow failure marked by deficiency of the three types of blood cells (red cells, white cells, platelets)

• Leukemia and cancer: Individuals can develop leukemia, especially of the head and neck.

• Lung disease: Often found in patients with DC, it usually develops later than the skin abnormalities and bone marrow failure.

• Excessive watery eyes

•Excessive sweating of the palms and soles of the feet

• Cavities and tooth loss

• Narrowing of the esophagus

• Urinary tract anomalies

• Liver disease

Information came from: https://rarediseases.org/rare-diseases/dyskeratosis-congenita/#symptoms

2017 Huiras

Golf Tournament

August 19, Sleepy Eye Golf Course

If you go:

The tournament itself is a nine-hole scramble on August 19 at Sleepy Eye Golf Club. Registration begins at 8 a.m. And shotgun start is 8:45. You can call the Sleepy Eye Golf Club ahead of time or show up the day of to participate in the event.

The event itself costs $50 and that includes golf cart and lunch. There were 44 golfers last year who competed and there are spots for 72 this year. Money goes toward DC research and Joe Huiras’ medical expenses.

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