Name: Niki Rakowitz
Approx Height: 5ft 4ins
Approx Weight: 155 lbs

1) How old were you when your symptoms began and what were they?
I had a "waddle" to my walk, and was very underweight for my age. I was always extremely weak and tired, intense pain in upper legs, and slept alot.

2) At what age were you diagnosed with Engelmann's?
I was in High School about 15yrs old when I began having severe pain in both my upper legs. I was not diagnosed until I was 18 years old. After many doctors passed me down. Eventually after being told that I was "anorexic" and "severely depressed" I was sent to a wonderful doctor at KUMC in Kansas City who was an Endorcronogist (spelling?). After LOTS of testing, muscel biopsy, and different medications. was diagnosed!

3) Are any other members of your family affected by Engelmann's?
No. There is no trace whatsoever of anyone having Engelmann’s in my family for as far back as we’ve been able to trace. But I do not know my Biological father so I am not sure about his side of the family.

4) What part(s) of your body are affected and how are they affected?
Most of my pain remains in my both my upper and lower legs. Usually a severe sharp pain, making it diffiult to walk. I have had pain in my upper arms and lower skull, but this pain is the same type just not as severe usually.

5) What pain medications have you taken during the course of your life and were they effective?
On my less pain days I can usually take Motrin (800mg) every 4 hours for relief. Then I have also taken a Steriod shot (dont know what it was called it started with a C?) that I took myself daily for a few months, this did help with the pain, but the actual injection was very painful, burning inside! Stopped the shots after 2 months, and had relief for about 6 months. Then now I use prednisone treatments, usually only a 2 week treatment or a month long treatment, depending on the severity of the pain.

6) Have you tried any other medications or treatments e.g.
Just the injections.

7) Do you experience fluctuating pain levels, or is it more or less the same at all times?
My pain levels also very daily, monthly, yearly. I do notice that since the birth of my daughter I have less severe pain when I do have episodes. And while I was pregnant that I was completely pain free!, with no meds!!

8) Are there certain things that make your pains worse? e.g. changes in the weather, physical exertion, hormonal changes (women).
Changes in my pain levels often occur during changes in the weather or temperature, but aren’t affected by particular seasons. I notice that cold and rainy weather causes more pain for me. Physical exertion such as walking, climbing stairs, or standing for long periods can also make my pains worse.

9) Are there certain things that help to ease your pains (apart from medication)?
I like to take a HOT bath and then use my electric blanket to help ease the pain and sleep through the night.
I also find that by rubbing/massaging the fleshier areas surrounding the affected area can help to ease the pain and its also relaxing.

10) Have you noticed changes in your condition as you have got older? e.g. has your pain worsened or improved? Have you developed any other problems as a result of bone thickening?
I have notice a lesser degree of pain since the birth of my daughter, not sure if it is age related or just the hormone level changes? I still have episodes of pain, but definatly not constant as prior to my daughter. Just notice the most severe pain now being more weather and activity related.

If there is any additional information that you would like to know then please just ask!