Hello, my name is Cheryl Jackson and my journey with HPP began last December when I was diagnosed at the age of 48, but as we all know I have been living with HPP my entire life! I live in Ringgold, GA/Chattanooga, TN depending on where I am in my home…we actually live on the state line. I have been married to Chuck for 23 years and we have a 22 year old son, Brady, who just graduated from the University of Georgia – GO DAWGS!! I am a chemist and started a chemical brokerage business in 2006. Traveling is my passion, I love to visit new places and experience new things! So as you can see, I live a very active life so being diagnosed with not one, but two rare chronic illnesses has been a bit surprising for me!
I also have another rare disease called Common Variable Immune Deficiency (CVID), which is one of 350+ primary immunodeficiency (PI) diseases…think “The Boy in a Plastic Bubble.” I lack key parts of my immune system, called immunoglobulins specifically IgA and IgG, which help my body fight infections. I also do not mount an immune response to any immunization/vaccination that I receive or pathogen that I come in contact with. I was diagnosed with CVID, which is another rare genetic disease, at 43 after a life time of chronic upper respiratory infections, tonsillitis, bronchitis, pneumonia, and urinary tract infections.
All that to get to my point…I had chronically low ALP levels and questioned my immunologist about it; he would only say that it was due to my immunodeficiency with no further explanation. My GI doctor referred me to an endocrinologist due to my vitamin D being low. He ran a metabolic panel on me and guess what…my ALP level was once again low! I asked him the significance and he also agreed that it could be tied to the immune issue, but I asked him to dig deeper after I did a bit of research myself. I was on one of my Facebook support groups for CVID and saw that someone else also had a low ALP level. Around the same time, I had begun to experience a lot of bone and joint pain and my fatigue was horrible! I was sleeping 10 hours per night, but unable to get out of bed until around noon each day (thank goodness I work from home)! At my next visit with my endocrinologist we discussed what we had both learned and decided it was time to do further testing. He checked my bone, intestine, liver isoenzyme and B6 levels, which were all abnormal. I received the HPP diagnosis in December 2018. My doctor wrote a prescription for StrensiqTM, which was denied. I was contacted by Panther concerning the denial and also got connected with One Source. It took 2 appeals, but with help from both Panther and One Source as well as great advice from members of the Soft Bones Facebook group, I finally was approved for StrensiqTM about 6 weeks ago. I am starting my 5th week of injections and have been experiencing some bone pain, fatigue, and site reactions, but am hopeful these will pass. I had the pleasure of attending a Soft Bones regional meeting in Nashville and it was wonderful to connect with others and hear their experiences.
Now that I know that I have HPP, things that I thought were just coincidence are actually HPP related. I did not walk until I was 15 months old and I had such severe in toeing (pigeon toed) that I had to wear corrective shoes until I was 7 years old. I also lost my front tooth before my 5th birthday and one of my permanent teeth presented in the roof of my mouth. I started orthodontics when I was in 3rd grade and wore braces for 5 years. I was diagnosed with scoliosis and kyphosis when I was 15 years old; my left leg is an inch shorter than my right. I have not experienced many fractures, only a deviated septum at birth, which was repaired when I was 24, and a stress fracture in my 5th metatarsal 4 years ago that still has not healed. My joint pain is mainly in my feet, hips, and knees, but I do have occasional shoulder pain and upper back pain, which I have always attributed to the scoliosis/kyphosis. I have degeneration in my left hip and tempo mandibular joint (known as “bird beaking”). I guess in a way chronic pain is my norm, just like being sick all of the time, so I did not know any different. In many ways it’s so hard to believe that I have 2 rare debilitating chronic diseases, and yes, they are a part of me, but the do not define me or what I do! Yes, I have CVID and HPP, but they do not have me!
My experience with Soft Bones has been very pleasant and informative; I look forward to connecting with others and helping to raise awareness so others are diagnosed much more quickly in the future!