Jewelry Maker Promotes Awareness With Beauty

For Stepheny Smith, a day without pain is a rarity.

Five years ago, she was diagnosed with Loin Pain-Hematuria Syndrome (LPHS), a condition that causes extreme pain in the kidneys and blood in the urine. The cause is debated and very little information can be found on the Internet about it.

“The main problem that we face is almost all doctors don’t even know what LPHS is,” said Smith, who lives in New Port Richey.

“There are whole states full of doctors that have never heard of this," said Smith, owner of Jewels of Eden online jewelry business, hosted on ArtFire.. "I don’t even know yet if Florida has doctors that know what I have.”

Smith, 37, was diagnosed in Ohio, where she lived until a year ago, after a year of tests to seek the answer to the on-and-off pain.

To raise awareness of the condition, Smith began creating custom bracelets. The idea came from a brainstorming session by her LPHS support group on Facebook on ways to teach people about a condition that fewer than 2,000 have been diagnosed with worldwide, Smith said.

 “I thought, well, duh, I make jewelry,” Smith said. “It just came to me one night. I said, 'why don’t I just make awareness bracelets?'”

Smith sells each bracelet for $10, just enough to cover the cost of making it. Unfortunately, she was unable to find an organization to donate to for LPHS research.

Each bracelet has a pewter ribbon charm and letters spelling out “LPHS” with a wristband of colored beads chosen by the buyer.

“We tried to come up with a color for the ribbon,” Smith said. “We just went with pewter ribbon and letters and then you pick the colors you love and you’ll wear it every day and everywhere you go. This isn’t relating a certain color to the condition; it’s about raising awareness.”

Smith only charges enough to cover the cost of materials because she doesn’t want to profit from LPHS. If there was an organization that did LPHS research, she’d consider raising the bracelet prices and donating the proceeds to it, she said.

Smith said that on good days, her pain is a three or four on a scale of 10, 10 being the worst pain imaginable. On bad days, it can be a six or seven and during flare-ups, an 8-10. Two and a half years ago, she went off her pain meds after developing a tolerance to them.

Now, she drinks a lot of water, takes vitamins, doesn't drive and avoids personal triggers, like sweet tea, that can aggravate the pain. She doesn’t recommend that everyone with LPHS abandon their medications, however. She said she just does what works for her.

Smith is a single mom with three teenagers, including a teenage boy with Asperger’s Syndrome. She can’t hold down a traditional job because of her flare-ups, so making jewelry, which she sells in her ArtFire shop, is her sole income.

“There’s no way I can take a job and just say, hey, I’m not going to work for two weeks,” Smith said.

She had previously worked at a doctor’s office but says she lost her job because she missed so many days to go to the hospital. Another employer, an attorney, refused to fire her despite her constant sick days, so she quit out of guilt, she said.

Then she found a passion for jewelry making.

“I never would have gotten into making jewelry if I didn’t have this condition,” Smith said. “I was working, going to college and raising kids, and I didn’t slow down for two seconds and getting this condition made me have to slow down. I was in bed, I was in so much pain and had all this time to waste.

Smith said that before she developed a more positive attitude, she suffered a lot. She was angry that she couldn’t do all the things she wanted to, that she had to miss her children’s school activities and couldn’t have a typical job.

Now she considers herself happier than she’s ever been, even before she had LPHS.

"It has opened my eyes to other art, broadened my horizon," she said. "I think I’ve gained a richer life after getting this condition.”

Smith is enjoying her new life in Florida and a supportive boyfriend who helps out around the house and with her three kids.

“If you accept where you are and stop thinking about all the things you can’t do anymore, then you can focus on what is actually happening around you and the beauty and the joy you can find in simple things,” Smith said. “You can be happy again.”

Smith doesn’t think a cure for LPHS will be found in her lifetime but said others remain hopeful. She said the first step is raising awareness.

“You have to get people aware of [LPHS], to get them riled up, to get people to do something, to do research,” Smith said.

She hopes her bracelets will help. The jewelry comes with business cards with a link to an LPHS blog that explains the condition in laymen’s terms and a brief description of the condition.

“If you’re wearing your bracelet and somebody asks you, ‘what's LPHS?’ you can hand them the card to look into it.”

Are you interested in purchasing an LPHS Awareness Bracelet? Contact Stepheny Smith through her ArtFire shop to place a custom order.