IU Health new Undiagnosed and Rare Disease Clinic giving families hope

Health

INDIANAPOLIS – IU Health is hoping to give patients and families a sigh of relief with their new Undiagnosed and Rare Disease Clinic.

They’ve already diagnosed their first patient. 

The new clinic has about 15 patients and 2-year-old Jordan Edwards is their first diagnosis. 

“It’s a mutation of the gene and IGF stands for insulin growth factor,” Jordan’s dad Ben Edwards said.

Jordan’s parents always felt guilty about her small size and small appetite.

Now, they know it wasn’t their fault.

“Knowing that this is a disease causing this. We’ve kind of backed away about worrying about what she eats and how much. She’s going to be her own littler person and do what her body can do,” Jordan’s mom Desiree Edwards said.

The Hoffman family hopes the clinic can do the same for their loved one Londyn.

4-year-old Londyn Hoffman has always been a little different from other kids her age. 

“She actually didn’t walk until she turned 3,” Londyn’s mom Jenna Hoffman said.

Her mom hopes the clinic will find out what’s causing Londyn’s developmental issues. 

“Oftentimes when a provider is seeing a patient and they don’t know what’s going on then there’s a lot of confusion to what tests should be done,” Dr. Erin Conboy said.

Dr. Erin Conboy has been working with the Hoffman family to take a deeper dive into Londyn’s medical tests. 

“If we can reanalyze that information for her specific set of symptoms in mind then we may be able to find an underlying cause,” Dr. Conboy said.

The Hoffman family knows by taking Londyn to the clinic there may be some light at the end of the tunnel for her.

“This might take years potentially to find the underlying cause, but we are going to keep trying to find that for Londyn.” 

“Londyn is a unicorn. She’s very unique and special and that’s just Londyn,” Jenna said.

IU Health says insurance does cover much of the cost associated with their new clinic and all the research is funded through grants.  

If you would like to learn more about the clinic click here.

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