I have so many fun posts planned! I actually made something crafty and I have a great giveaway in store...but right now my heart is heavy and I need you friends.
Our son Nate, 14, was diagnosed with Scleroderma Coupe de Sabre about a year ago. This is a rare disease and not much is known about what causes it or what it will do. It is considered untreatable. His doesn't not seem to be systemic (which would be fatal) and has remained superficial (only affecting his tissue and muscles.) His started on his chin and is continuing up the left side of his face. He has discoloration on his chin, and above his lip. The disease has taken the left side of his lip, and he has lost all flesh and fatty tissue. He now has skin on bone until right below his eye.
Nate is experiencing a very rare and not very documented disease. It is referred to as an "orphan disease." No one really knows what it will do. It affects people very differently.
The next season is crucial for him. He has had two episodes of pain. The pain normally associated with this disease and Parry Romberg Symdrome is excruciating and untreatable. It is referred to by Drs as the "suicide disease." His pain hasn't been that bad. Pray it doesn't continue. With the onset of this pain many experience seizures and stroke. Our hope and that of his Dr. would be that because his manifestations have been superficial so far they wouldn’t cause these symptoms. Because there is no true pattern this disease follows, we are left to speculate and wonder. I have talked to two families whose chidlren showed the symptoms Nate does and then developed seizures and one a stroke.
Some lose their organs. It appears that Nate's eye will not be affected by the disease but losing the fatty tissue in that area can cause the eye to sink bank into the socket and disrupt sight. There is a woman on youtube who "looks fine" but describes her Sceleroderma and deteriorating sight.
Nate is being referred to a neurologist, an ophthalmologist and will have blood tests done. These may or may not show us what is going on but will serve as a base line to anything that does happen. Nate is being prescribed medication that we aren't sure about. There are also some routes that we would like to take nutritionally. The drugs that are typically prescribed would inhibit the immune system (because his is attacking himself.) I have not seen cases where they truly help the way that we would like to see. There are some nutritional things (like shitake mushrooms) that can help calm his immune system and balance. He was prescribed anti-inflammatory drugs. There are things that can be done nutritionally to do this but they would drastically reduce his diet.(no diary, wheat, corn or eggs, among other things) Keep in mind that nothing has been shown to slow down or combat this disease. We, as the parents of a child afflicted are trying to find a cure for an incurable disease.
Please pray for wisdom, for answers, for peace. For the physical and emotional energy we will need during this time. For unity and laughter for us together as a family.
Nate continues to have an amazing attitude through this all. His parents are worried yet trusting God. How will we pay for any of this? How can we quickly figure this all out when the experts can't? What is going to happen to our son? What is his future? Where would a stroke, loss of eyesight, seizures or chronic pain leave him? What about all the dreams we have for our first born?
I have no eloquence right now. I included pictrures of Nate because he really doesn't look that bad. He does have severe facial deformity but because of it's placement it needs to be pointed out. So far. These are especially odd pictures because he is ALWAYS smiling. Even when it really isnt the right time to be:)
There is some information online that will better explain the things that I had trouble with
Sceroderma Coupe de Sabre:
Parry-Romberg syndrome:
Neuropathic Facial Pain and TN (Trigeminal Neuralgia)
God Bless!
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Isn't she wonderful??? $6.00. My big dilemma became: "Do I buy something for ME" which soon turned to "Do we use it now or wait until Christmas?" I guess no matter how blessed one gets there are always dilemmas ;)
